NORD Rare Summit 2015
Colin Hayes 9th Annual Dinner & Dance
A Message from the President
Greetings to our friends, family and devoted Menkes supporters. I promised I would be better at providing updates on the work of the foundation, and yet here another year has passed without this letter reaching the many loved ones who have ensured our continued success. I am very excited to share all the wonderful and creative ways our Menkes community has bonded together in promoting awareness in memory and honor of the children who have forever changed our lives.
New Year’s Eve 2014 was celebrated in Lynden, Washington, with a formal gala called Praying for a Miracle hosted by Amy Demeyer, mother of Baker, a boy who has truly proven that miracles can happen in the fight against this disease. Her supportive community helped raise an astounding $24,000 via auctions, dinner and a dance. Amy has been a devoted supporter of The Menkes Foundation throughout the years by entering a Run for Baker team in local half marathons and selling t-shirts promoting awareness of Menkes.
Kim Larrick, kicked off the month of January by inviting her closest lady friends and family for a night of Sipping & Painting in Mt. Airy, Maryland, to honor her son Ben who is now 8 and thriving because of early diagnosis and treatment. Kim has become one of my dearest friends in this journey that we lovingly say we despise, but also appreciate because of the silver lining of finding the truest of friendships filled with laughter amongst our tears. In past years, Kim and Dave Larrick have hosted The Pennies from Heaven golf tournament that even in the worst of weather has proven to be both profitable and fun. We are sincerely grateful for their drive, dedication and the friendship they have bestowed upon us these last 8 years.
In April, I was invited to Washington, DC, to share the masterpiece film created by Daniel DeFabio in honor of his son Lucas. The film was presented as part of the Terrapin Orphan Drug Conference,which gave the Foundation the opportunity to step into a new venue to educate others on Menkes disease and its only successful (but still experimental) treatment of copper injections. Although the film was only 11 minutes, it left a lasting impression on an audience of over 500 pharmaceutical representatives, bio-chemists, physicians and medical informational technologists. Since this conference, Daniel has had several other opportunities to share his film at other forums, so we are very grateful for his ability to raise awareness through his videography skills. (Click here to watch the film)
In early June, my husband Drew and I were invited to Annapolis, Maryland, by our friends Heidi and Dan Berlin to memorialize their son Adam by running in The Arc’s Superhero 5K/10K Family Fun Run. Team Adam raised the most donations for this incredible event out of all the participating teams. After attending this year’s event as a guest, The Menkes Foundation was invited to serve as a corporate sponsor for next year’s race. We accepted this great opportunity, as we are always looking for ways to support other rare disease non-profits, both monetarily and emotionally.
Also in June, I traveled to Chicago, IL, to attend The First Annual Trot for TJ. TJ’s story is quite unique and one each of you should take the time to learn about through the raw and very real writing of his mother Darcy on her blog at supportingtj.weebly.com. The weekend was kicked off with a 5K run, followed by an authentic city block party. I was humbled by how accepting their community was of me and my best friend Mere who accompanied me on the trip. We had the privilege to eat the best food, play fun games and share sweet stories of the baby whose legacy will live on forever. This event raised $12,500 through the trot, raffles and personal donations.
In July, we were able to serve as a significant sponsor of the first Cell Biology of Metals Conference in Vermont. This conference provided and will continue to provide an international forum for the presentation and discussion of cutting-edge research in the biological and chemical sciences of metals like copper and their related technologies. The Menkes Foundation is proud to be a supporter of this conference and to help make it possible for young researchers to attend, including investigators (who are just starting their laboratories), graduate students, and Postdoctoral Fellows. Chairman Dennis J. Thiele, Ph.D. of Duke University School of Medicine stated “everything The Menkes Foundation is doing is accelerating a collective passion among the patients and their families, and the scientists and clinicians, in a way that I have never seen in the past 31 years I have been a researcher in the field of copper metabolism. Every top scientist and clinician in the world with a research/clinical interest in understanding copper metabolism is soon going to become very familiar with The Menkes Foundation and its mission to cure Menkes disease.”
Also in July, for a personal visit and probably one of my best evenings this year, we were invited to a dinner party at the home of Kim and Dave Larrick in Baltimore, MD, to visit with their son Ben and John Delano, a Menkes boy from Atlanta, GA, who has tugged on every heart string I have. During my memorable evening with Ben and John, I felt confident that Drew and I are doing what we are meant to do. To see two little boys born with a disease that has a fatality prognosis of 3 years, not only surpass the timeline but also excel in almost every milestone because of early detection and treatment, was truly a gift. Ben held my hand and showed me every little trinket and toy in his room and shared stories of each. John in his shy way allowed me to snuggle his fuzzy little head while working his iPad like the true boss that he is. Our son Wesley’s presence was in that room with me, keeping my tears hidden so that I could rejoice that these angels are living the life he was denied. I am so grateful to Allison and Kim for giving us the chance to know their sons, as they are the truest face of hope in our mission to conquer Menkes.
Our favorite Bostonians will host the 9th Annual Colin Hayes Dinner, Dance and Raffles in Quincy, MA, on Saturday August 22nd. Cheryl Wallace and Danielle Hayes, the grandmother and mother of Colin, have worked hard every year to host this successful and entertaining event. This annual event has made it possible for us to do a variety of awareness advertising including medical journals, radio PSA's, billboards and the sponsorship of research conferences.
As you see, these ambitious fundraisers have not only given us the wonderful opportunity to meet and greet incredible people but also to keep our promise to our angel babies that Menkes disease will be known in the medical community. At one time, our Menkes community was isolated and almost invisible, with little to no emotional support for families experiencing this heartbreak. Today, our presence is growing rapidly, with fundraising and awareness events almost monthly and several social media support groups to connect those sharing the same journey. None of this would be possible without our network of generous family and friends, kind words of encouragement, prayers and perseverance. Despite the success this year has brought, the lingering sadness remains for over 19 families who are grieving the loss of their child to this dreadful disease in the past twelve months. We mourn with each of them, and are humbled that they trust us to honor their baby with donations sent our way.
It is with great pleasure that we announce that because of these successful fundraisers we are now able to collaborate with The National Institute of Health in Bethesda, MD, in its efforts to study a cutting-edge method for newborn screening through the use of DNA Sequencing Analysis using PKU blood tests. Efforts are also underway to establish a Menkes patient registry that will directly impact the progression of the only current clinical study on Menkes disease.
In addition, we will continue to support medical and scientific conferences, both stateside and internationally, including our sponsorship of the International Copper Meeting 2016, for we firmly believe these will serve as a gateway to finding a cure one day soon. Awareness and early detection are crucial to the efforts to ensure that children with Menkes can have a chance of normalcy and longevity, so we will continue to promote awareness through marketing items, billboards, and journal advertisements. Stay tuned for more great things to come, especially in November, the dedicated month to Menkes Disease and Awareness.
Cell Biology of Metals 2015
Mount Snow, Vermont
In recognition of rare disease month the Menkes Foundation is proud to make a contribution to the 2015 Cell Biology of Metals Gordon Research Conference. This conference will provide an international forum for the presentation and discussion of cutting-edge research in the biological and chemical sciences of metals like copper and their related technologies. The Menkes Foundation is proud to be a supporter of this conference; and to help make it possible for young researchers from various disciplines to attend, to include investigators (who are just starting their laboratories), graduate students, and Postdoctoral Fellows. The Menkes Foundation would not be able to continue our mission to improve research and awareness without those who’ve made generous contributions to our cause in honor of a child that has suffered from cruelty of Menkes disease.
Chairman Dennis J. Thiele, Ph.D. of Duke University School of Medicine stated “everything The Menkes Foundation is doing is accelerating a collective passion among the patients and their families, and the scientists and clinicians, in a way that I have never seen in the past 31 years I have been a researcher in the field of copper metabolism. Every top scientist and clinician in the world with a research/clinical interest in understanding copper metabolism is soon going to become very familiar with The Menkes Foundation and its mission to cure Menkes disease.”
The guiding principle of this conference is to encourage communication and discussion of ideas and new unpublished results at the frontier of the field of the Cell Biology of Metals like copper, by bringing together outstanding research scientists and trainees from academia, industry, and Government. The Cell Biology of Metals is interdisciplinary and involves researchers from a wide array of scientific disciplines, including molecular biology, biochemistry, cell biology and physiology, chemistry, plant sciences, and human disease.
The slate of speakers at this conference is absolutely first-rate, with an international collection of world-leading scientists engaged in research on the roles of metals in biology. Particularly relevant to Menkes Disease are speakers such as Michael Petris, Svetlana Lutsenko, Jonathan Gitlin, Roman Polishchuck, Martina Ralle, and others whose work is intimately tied to understanding human copper metabolism. Furthermore, this meeting will have speakers such as Pontus Gourdon, who determined the structure of the copper transporter from bacteria that is functionally equivalent to the Menkes protein. These studies have given us tremendous insights into how the Menkes protein function and how mutations alter function.
Our knowledge on the role of metals and metal complexes in biological systems, ranging from viruses to humans, is expanding at a rapid pace. This Gordon Research Conference on the Cell Biology of Metals will serve as a focal point to bring together a diverse cadre of researchers from different fields to foster the transmission of new information and ideas, and to facilitate the genesis of new collaborations that propel the field forward. Central disciplines will include genetics, cell biology, physiology, and medicine as well as the chemistry and biochemistry of metal homeostasis by a range of organisms. Session topics that will be covered encompass the mechanisms for metal absorption, distribution, utilization, sensing, and regulation at the cellular and organismal level; metal co-factor assembly; metals and pathogens; the structural biology of metal proteins; metals in growth, development, and disease; manipulation of metals in cells; and other areas that will advance our understanding of the biology of metals as they relate to model systems, agriculture, and human disease.
9th International Copper Conference
Vico Equense, Italy
The Menkes Foundation was proud to be part of the 9th International Copper Meeting in Vico Equense, Italy. The meeting was organized by Jonathan D. Gitlin, Dennis J. Thiele, Simon Ciofi-Baffoni, and local organizer Roman Polishchuk. This event is the premier venue for discovery and dialogue for copper research with over 100 scientific investigators in the fields of biology, chemistry and medicine participating. The meeting featured oral and poster presentations on the scientific study of copper with the findings of over 41 research studies being shared and discussed.
The Copper Meeting studied a multitude of copper related research studies on various diseases such as Menkes and Wilson diseases. The conference also studied the effects of copper in diseases not normally associated with the mineral such as Parkinson’s, Alzheimer’s, and Osteoporosis. Copper has been found to have ties to some of these more common diseases which could lead to additional studies on the role of copper and copper transport within the human body.
Oral presentations documented ongoing research studies followed by informative discussion and poster presentations to illustrate findings. Dr. Stephen G. Kaler’s presentation covered the recent discovery of additional copper transport disorders including MEDNIK, Huppke-Brendel and ATP7A-related distal motor neuropathy. Research of these diseases and advances in genomics and neuroscience has helped lead to a better understanding of copper transport. Dr. Kaler also highlighted the role of mouse and zebrafish models in Menkes research to study brain-directed viral gene therapy combined with subcutaneous copper injections. Dr. Kaler also emphasized awareness and newborn screening to enhance early diagnosis and treatment of copper disorders.
The conference concluded with a celebration of the careers and contributions of renowned copper scientist Professor Joseph Prohaska, University of Minnesota Medical School and Professor Julian Mercer, Deakin University. Both gave a fascinating insight into their careers studying copper and advancements in the field.
The role of the Menkes Foundation at these conferences is to bridge the gap between the research community and Menkes families by providing the perspective of those who have suffered from this dreadful disease. Because Menkes is still considered by many to be a rare disease it is important to let researchers know how much they are appreciated and how many children they can help with each small step they take in the fight against Menkes. The Menkes Foundation will be providing our supporters with additional research information from the conference including the research overviews and poster images.
Those in attendance represented 64 of the world’s finest institutions in the fields of science and medicine including: The University of Barcelona (Spain), The University of Manchester (UK), The University of Saskatchewan (Canada), The University of Florence (Italy), UCLA, Duke University, Monash University (Australia), University of Alaska Anchorage, Deakin University (Australia), University Rio de Janeiro (Brazil), UC Berkeley, Auburn University, Telethon Institute of Genetics and Medicine (Italy), Johns Hopkins University, University of Alabama Birmingham, NYU School of Medicine, The University of Queensland, Oregon Health and Science University, The University of Connecticut Health Center, Durham University (UK), Indiana University, Marine Biological University, Texas A&M University, University of Liverpool, UFRJ Brazil, UC San Diego, Western Michigan University, Deaconess Hospital Leipzig (Germany), The National Center for Scientific Research (France), Research Institute of Experimental Medicine (Russia), Osaka University (Japan) , University of Pannonia (Hungary), National Institute of Health, University of Maryland, Technical University of Kaiserslautern (Germany), King’s College (London), Ruhr University Bochum (Germany), University of Sherbrooke (Canada) , University of Missouri, University of Chile, California State University Fullerton, Adam Mickiewicz University (Poland), Faculdade de Farmacia University (Portugal), Universidad de Granada (Spain), Umea University (Sweden), Copper Alliance Germany, Swedish University of Agricultural Sciences, Goethe University (Germany), Colorado State, Northwestern University, CEA Laboratory (France), Center for Environmental Resource Management (Italy), Charles University (Czech Republic), La Fondazione Don Carlo Gnocchi (Italy), Tomsk State University (Russia), University of Catania (Italy), Ewha Womans University (South Korea), Cornell University, The University of Melbourne (Australia), Calgary University (Canada), Tsinghua University (China), University of Rosario Institute of Molecular and Cellular Biology (Argentina), Fatebenefratelli Hospital (Italy), The University of Minnesota Medical School, Telethon Institute of Genetics and Medicine (Italy).
Supporters of the 9th International Copper Meeting include the Wilson Disease Association, The Menkes Foundation, MDW, The Center for Genome Regulation, Annie Danks Trust, NIKON, Fondazion Sacconi, and the Associazione degli Amici di Leonardo. To download a PDF of Copper Meeting overview click here.
Menkes Foundation Funding Collaborative Research
Thiele Laboratory at Duke University Medical Center
and The International Copper Conference
The Menkes Foundation has recently made a donation in the amount of $10,000 in support of the Duke University Medical Center and the Annual International Copper Research Conference.
Dennis J. Thiele, Ph.D. Professor of Pharmacology and Cancer Biology at Duke University Medical Center is actively researching the role of copper transporters in growth, development and disease and his work has been featured in several publications.
The International Copper Meetings began in 1996 as a venue for scientists and physicians to present cutting edge advances in our understanding of the biology of copper and its role in health and human disease. The information presented, the ideas exchanged and the collaborations initiated at the International Copper Meetings have transformed our understanding of the role of copper in disease, the ability to diagnose disease and the underlying biochemical mechanisms for copper metabolism in health and disease. Researchers have learned that making critical advances in understanding disorders of copper metabolism, such as Menkes Disease, requires the brain power of leading scientists who approach copper metabolism from the perspective of clinicians, microbiologists, chemists, plant biologists, biochemists, geneticists and physiologists.
Dr. Steve Kaler, from the National Institute of Child Health and Human Development at NIH, will be among those presenting on the diagnosis and gene therapy approaches to Menkes Disease treatment. The Menkes Foundation has also been asked to make a presentation on the importantance of awareness and early diagnosis from the personal perspective of Menkes parents. We believe this collaborative effort will lead to important strides in research and treatment of menkes disease.
7th Annual Colin Hayes Benefit Dinner
Saturday, August 3rd 2013
The Quincy Neighborhood Club, Quincy, MA
Over 140 supporters were in attendance at the 7th Annual Colin Hayes Benefit Dinner in Quincy, MA. The dinner and awesome raffle items raised over $8000 to be used in the fight against Menkes disease.
As always Cheryl Wallace (Colin's grandmother), Danielle Cimino (Colin's mother) and Cheryl's Hyde Park girfriends did an amazing job to make the evening a wonderful experience for all in attendance while simultaneously raising awareness for Menkes boys everywhere, all in honor of Colin.
One special guest in attendance was Boston City Counselor and Mayoral Candidate Rob Consalvo, who has been a huge supporter of Menkes over the last six years. As usual Cheryl made sure that no detail was overlooked, even the dessert was a special cake that featured a number of our Menkes boys riding in classic cars and hot rods with Wesley Quinn Eckman in the passenger seat next to Colin. Click here for pictures
Chery's devotion and dedication to Colin and his Menkes brothers never ceases to amaze, especially when you consider the awesome list of organizations that donated to the event including: 5 Wits Espionage, Bayside Resort, Boston Bruins, Boston Celtics, Boston College, Boston Red Sox, Brockton Rox, Bubbling Brooks, Christmas Tree Shoppe, Cinema's at Legacy Place, Clark's Trading Post, F1 Boston, Fresh on Newbury Street, Hair By Changes, Jillian's Boston, Jake & Joe's Bar and Grill, New Hampshire Motor Speedway, Patriot's Hall of Fame, Roche Brothers, Ron's Gourmet ice cream, Six Flags, Southwick Zoo, Stop & Shop, Tahiti Restaurant, The Inn at Swan River, The Inn on Onset Bay, TJX Corp., Wianno Club, and Yankee Candle
Individuals that contributed include: Abina O'Sullivan, Carol Hillery, Diane Paylor, Gordon Wilcox, Jesse Stanley, Jessica Clinton, Joe Shaughnessy, Kim Leveroni, Lillian Berger, Mary Conroy, Mary O'Brian, Maureen & Bill Wilbur, Melinda Prescott, Patsy Hayes, Shelly, Snookie Johnson, Susan Hileman, Tom Stanley, and Yesenia Valdez
Volunteers include: Carol Clinton, Debra Charrie, Elaine McGuinness, Jayne Savioli, Nancy Franklin and Roseanne Rossi
University of Missouri Discovery Helps Explain
How Children Develop Rare, Fatal Disease
April 30th 2013
One of 100,000 children is born with Menkes disease, a genetic disorder that affects the body’s ability to properly absorb copper from food and leads to neurodegeneration, seizures, impaired movement, stunted growth and, often, death before age 3. Now, a team of biochemistry researchers at the University of Missouri has published conclusive scientific evidence that the gene ATP7A is essential for the dietary absorption of the nutrient copper. Their work with laboratory mice also provides a greater understanding of how this gene impacts Menkes disease as scientists search for a treatment.
Humans cannot survive if their bodies are lacking the ATP7A gene, yet children can develop Menkes disease when the gene is mutated or missing. Previously, scientists did not have a good model to test the gene’s function or develop an understanding of the underlying causes of the disease symptoms. In his new study, Michael Petris, associate professor of biochemistry, was able to modify mice so that they were missing the ATP7A gene in certain areas of the body, specifically the intestinal track where nutrient absorption takes place.
“These findings help us to understand where in the body the function of this gene is vital and how the loss of the gene in certain tissues can give rise to Menke’s disease,” said Petris, who is a researcher in the Bond Life Sciences Center and holds an appointment in the Department of Nutrition and Exercise Physiology. “We want to continue to explore the underlying biology of Menke’s disease to determine where we should focus our research efforts in the future. If we know which organs or tissues are most responsible for transporting copper throughout the body, we can focus on making sure the gene is expressed in those areas. This disease is ideal for gene therapy down the road.”
Petris found that young mice missing the ATP7A gene in their intestinal cells were unable to absorb copper from food, resulting in an overall copper deficiency that mimics symptoms of Menkes disease in children. Petris says it’s vital to ensure that the developing newborns absorb enough copper during the neonatal period when the demand for the mineral is highest.
“Copper is a little-appreciated but essential trace mineral in all body tissues,” Petris said. “Cells cannot properly use oxygen without copper; it helps in the formation of red blood cells, and it helps keep the blood vessels, nerves, skin, immune system and bones healthy. Normally, people absorb enough copper through their food. However, in the bodies of those with Menkes disease, copper begins to accumulate at abnormally low levels in the liver and brain and at higher than normal levels in the kidney and intestinal lining.”
Newborn screening for this disorder is not routine, and early detection is infrequent because it can arise spontaneously in families, Petris said. Many times, the disease is not detected until the symptoms are noticed, and by that time, it can be too late for any aggressive treatments.
“The clinical signs of Menkes disease are subtle in the beginning, so the disease is rarely treated early enough to make a significant difference,” he said. “However, a single dose of copper injected into mice within a few days of birth restored normal growth and life expectancy. Early intervention was critical because treatment that began after symptoms developed wasn’t successful.” Read More
Written by Kate McIntyre. Published by the MU News Bureau 329 Jesse Hall, Columbia, MO 65211; http://munews.missouri.edu/news-releases/2013/0430-mu-discovery-helps-explain-how-children-develop-rare-fatal-disease/
NIH - NICHD Research Perspectives - Discussing Menkes and Development of Supplemental Treatments with Dr. Stephen Kaler
February 27th 2013
The National Institute of Child Health and Human Development, part of the National Institutes of Health, discussed Menkes disease in a recent installment of their Podcast series NICHD Research Perspectives. The February 2013 installment of Research Perspectives featured research from the NICHD’s Molecular Medicine Program, which focuses on understanding the role of trace minerals - minerals needed in very small amounts - on human health. February’s podcast guests were Dr. Tracey Rouault and Dr. Stephen Kaler who described their efforts to better understanding disorders of iron and copper metabolism.
Dr. Kaler discusses the treatment of Menkes disease with copper injections and also discusses the prospect of "developing a supplemental treatment that would offer more hope for patients who do not respond to copper alone." Dr. Kaler goes on to say "we recently used viral gene therapy to rescue a lethal mouse model of Menkes disease, and we’re developing a path forward to use this treatment in human subjects. Gene therapy is a way to add correct versions of the ATP7A copper transporter to the cells of the body of Menkes disease patients. It seems that this promising approach, in combination with early copper injections, will be helpful for preventing brain damage in a larger percentage of patients with this illness. However, early diagnosis will remain important, and we hope that advances in newborn screening using DNA sequencing will eventually enable this.
The full February Podcast (MP3 audio) and Transcript can be accessed here.
The Menkes discussion begins about 7 minutes into the podcast.
Cannon Boy Run
A Rally of Support for Baby Canon
On a crisp and frosty Thanksgiving morning, friends and family of Cannon Rigby Copeland gathered in Wellsville Utah to participate in the first Cannon Boy Run. Designed as a fun run for all ages, the Cannon Boy Run is a rally of support for Cannon and the families that are affected by Menkes syndrome.
Two and a half years ago, Cannon Rigby came to the Copeland family. Their third child and second son. A few months into Cannon’s life experience here on Earth, things seemed to be amiss, for he was not developing in the preconceived manner for a child of his age. After months of questions, research and lots of tests, (which initially provided no definitive answers) it was confirmed that Cannon did have the rare genetic disease of Menkes.
Cannon is a great spirit and has brought many life lessons with him. It was that spirit that was the focus of the Cannon Boy Run. The participants gathered to celebrate Cannon’s spirit and the spirit of life. About 50 kids and adults showed up to show their support. The day started with everyone writing Cannon a ‘well wish’ card and tying it to a balloon. Then the Presentation of the Pennies. Since Menkes is a copper deficiency, each participate brought one ‘copper’ penny for each year old they were. With pennies in hand, all participants dropped their penny donations in the jar. All donated pennies went directly to the Menkes Foundation Organization, which supported the event with prizes and giveaways, plus awareness literature.
The run consisted of a fun course of 8 events, done in teams. The teams consisted of a young run, (under 12) and an adult runner. The 8 events were simply and fun, somer-salts, football passed, archery, drawing, hula hooping, cartwheels and piggyback rides. All teams ran the course at least twice, the winner would advance until a winning team was determined. The winning team took home the Cannon Boy Run Cup. Once the cups were presented to the winners, everyone took the well wish card and balloon that it was attached to, and gathered in a large circle. Together the group, holding their balloons and well wishes, gave the Cannon Boy Run cheer as they ran into the middle of the circle and let their balloons float up into the heavens.
There were lots of smiles, tired runners, and a few tears. But having the opportunity to try and demonstrate their love and support for a strong and beautiful boy and his family was the feeling everyone left with in their heart.
Advertising campaign with Cell Press
The American Journal of Human Genetics
The Menkes Foundation is pleased to announce our new advertising campaign with Cell Press, one of the leading publishers of scientific/medical RESEARCH journals. Cell is a peer-reviewed scientific journal, which publishes research papers across a broad range of disciplines within the life sciences. Areas covered include cell biology, systems biology, stem cells, genetics and genomics, neuroscience, and biophysics among many others. According to ScienceWatch, the journal was ranked FIRST overall in the category of highest-impact journals (all fields) from 1995 through 2005. According to the Journal Citation Reports, in 2011 the journals impact factor ranking it 16th out of 8,281 indexed journals. Learn more about Cell Press at www.cell.com
Over the course of several months our advertising campaign will feature full-page/full-color ads in multiple print and digital journals including The American Journal of Human Genetics. The campaign also includes thousands of Web-site banner ad impressions on Cell.com, widely distributed e-mails to thousands of scientific/medical researchers, and the distribution of hundreds of our brochures at research conferences. This campaign is an important step in helping The Menkes Foundation to reach and educate the scientific research community on Menkes disease. The Menkes Foundation also will continue to advertise in a number of top medical journals. It is our sincere belief that these efforts will eventually lead to earlier diagnoses and improved treatments for those who suffer from Menkes disease. These efforts would not be possible without our supporters who have worked diligently on fundraising efforts throughout the world.
6th Annual Colin Hayes Benefit Dinner
August 4th 2012
The 6th Annual Benefit Dinner, in honor of Colin Hayes was held at The Neighborhood Club of Quincy, on August 4, 2012, outside of Boston, MA. Cheryl Wallace, mother of Danielle Ciminio & grandmother of Colin Hayes, works relentlessly all year preparing for this special evening as a way to honor her perfect grandson who has Menkes Disease.
During cocktail hour, 120 guests and supporters of Colin & The Menkes Foundation, were engrossed in choosing which raffle basket to place their tickets in. There were four tables of baskets filled with sports, home goods, pampering, food, & homemade items all compiled lovingly throughout the year by Cheryl and her closest friends. Cocktails and competition during this auction raised $8,000 for The Menkes Foundation’s awareness campaign. Guests enjoyed a delicious buffet style dinner over candle light, followed by a heartwarming speech from Cheryl and Danielle sharing Colin’s brave battle against Menkes over the years. Guest of honor was unable to attend due to asthma related complications.
Drew & Jamie Eckman professed their gratitude for the support from this “Bostonian Family”, and shared what the raised funds would be used for in promoting awareness. Dancing brought this fabulous evening to an end!
*Some of the $5 Raffles include: Two night stay in Cape Cod, Signed Baseball (Joe Lackey), Jillian's Gift card for 25 guest, Signed Patriots Football jersey (Vince Wilfork), Sign Celtics Ball ( Jeff Green), Signed Football (Darias Butler) and much more! The $1 raffles include Brockton Rox tickets, Red Sox Basket, Pat's Basket, Bruins Basket, Wine Baskets, tickets to the Southwick Zoo, F1 Boston, Passes to Coco Keys, Texas Roadhouse Gift Card, Outback Steakhouse Gift Card, British Beer Comp, Movies Tickets and many more wonderful items.
Thank You to all our Sponsers: Wallpaper City, Randolph Eng, Hillcrest Construction, Michael Bourque, M.B.O.Precas, Inc., Hyde Park Savings Bank, The Paper Store, Al Courtney, Panzieri Construction, and The Law Office of Martin J. Murry.
Team JD hopes to bring awareness to Menkes Disease
May 19th 2012
Corpus Christi, TX
Teams JD participated in another run, Beach to Bay Corpus Christi, Saturday, May 19 in support of JD “Bubba” Ferron, born April 1, 2010 in Austin. (4/1/2010-2/3/2012). JD “Bubba” is the son of David Ferron; brother of Sadie Ferron; grandson of Lisa and Scott Atkinson of Kenedy, David Ferron Sr. and Sarah Ferron of Bergman, AR; nephew of Alleasha and Lance Smith, Katlyn, Taylor, and Jake Atkinson. JD recently passed in February from Menkes disease. A big purpose for this run is to “know more”, not many people have heard of this disease, it’s a copper deficiency in the body that begins during infancy.
Local charities in the Coastal Bend area depend on “Beach to Bay” to remain vital in the community. Charities including Special Olympics, the Naval Relief Society and other local school groups participate. The Relay Marathon takes place on Armed Forces day. Our relay consisted of 2 teams of 6. Again, the main reason for Team JD was to inform people of the Menkes disease (View Pictures).
Five-Year Anniversay Gala
May 4th 2012
On a beautiful spring evening on the outskirts of Washington, DC supporters, friends and family gathered in the Capitol View Ballroom at the Key Bridge Marriott in Arlington, VA to celebrate the 5th Anniversary of the Menkes Foundation.
This location was chosen because of the wonderful care Wesley Quinn Eckman received at nearby DC Children's National Medical Center where he was diagnosed with Menkes in 2006. The location also offered picturesque scenery with the Washington Monument, Jefferson Memorial and twinkling lights of Georgetown as a backdrop for the event.
The evening commenced with a cocktail hour that entailed passed hors d'oeuvres, artisan cheese/fruit displays and an open bar that included a signature Blue Hawaiian cocktail. Guests had the opportunity to silently bid on 22 items ranging from sports memorabilia, dinner gift certificates, thirtyone specialty items, high end electronics to a handmade quilt crafted by Jamie Eckman, President of the foundation. Prior to dinner, Meredith Lauzier, a dear friend of Jamie & Drew’s performed a loving toast to the efforts the foundation has made in promoting awareness of Menkes disease. A four course dinner was served followed by two elaborate dessert tables including a chocolate fountain.
Jamie & Drew Eckman spoke about the awareness campaign that has implemented over the past 5 years and how the foundation has served as a networking entity for Menkes families around the world. Funds generated through donations over the last five years have led to educational medical Advertisements in top medical publications such as The Journal of the American Medical Association, The New England Journal of Medicine, The Pediatric Journal, The Journal of Obstetrics & Gynecology, Emergency Medicine News and Emergency Medicine Magazine. The Menkes Foundation will continue to place Ads in these types of publications and also increase efforts to have newborn Menkes screening tests implemented throughout the country.
Danielle Ciminio & Jay Hayes and their son Colin (who suffers from Menkes), traveled from Boston to serve as our guest of honor. Other Menkes families honored were Tina & Lance Locklear (parents of Lance, Jr.) from Baltimore MD, Heidi & Daniel Berlin (parents of Adam) from Edgewater, MD and Kim & Dave Larrick (parents of Ben) from Mt. Airy, MD. The Larrick's gave a personal testimony in how early diagnosis and treatment have given their son Ben a better prognosis with more quality of life.
Tears were shed, hugs were shared and laughter was embraced from each of our 92 loving supporters that attended helping us raise $4200. We personally would like to thank everyone who helped in making this a special night to remember and honor all the Menkes angels here in on earth and those in heaven (View pictures).
4th Annual Pennies from Heaven Golf Tournament
April 21st 2012
The 4th Annual Pennies from Heaven Golf Tournament raised $8200 toward Menkes awareness! The organizers of this event, Dave & Kimberly Larrick did a remarkable job of the making the event fun for everyone in attendance. This event will enable us to advertise in yet another medical journal, teaching members of the medical community about this disease!
Carson's Crew Half-Marathon 2012
April 21st 2012
It's only been a few months since Carson earned his Angel Wings but it's instantly recognizable that he had a wonderful impact on everyone around him during his life. Many of those who knew him best, including his parents Sarah & Jeff Bowman, recently formed "Carson's Crew" to celebrate his life and raise Menkes awarness when they decided to participate in the OZ Half-Marathon in Olathe, Kansas. The Crew committed themselves to the months of training it required in order to compete with the other 1200+ runners and walkers participating in the event.
There are a variety of reasons why people commit themselves to grueling training and self sacrifice. It could just be for some exercise in order to lose a few pounds and get in shape, or it could be the camaraderie of doing this with family and friends, but whatever the reason it was all done in honor of Carson. As a group, Carson’s Crew decided to raise money for the Menkes Foundation. The goal of $5000 was met through runners, sponsers, and the selling of raffle tickets for some amazing prizes! Prizes included a one week’s stay in Tahoe, a two night stay in Kiawah Island Golf Resort and a flip camera. A large donation personal was made by a friend from Des Moines, Iowa.
Each team member wore a stylish running t-shirt bearing the name Carson’s Crew on the front and the Menkes Foundation logo on the back. Great job Sarah & Jeff Bowman for organizing and participating in such an admirable fundraiser (View pictures).
5th Annual Colin Hayes Softball Tournament
August 13th 2011
Hyde Park, MA
Looking for something to do this weekend? Come support The Menkes Foundation and Colin Hayes and friends at the 5th Annual Softball Tournament! The Tournament features 10 TEAM DOUBLE ELIMINATION SOFTBALL, RAFFLES, FOOD AND DRINKS, BAKE SALE and entertainment for the kids!
Following the softball tourament a Benefit Dinner will be held at the Holiday Inn, Dedham, MA at 7pm. Dinner tickets are available for $30 per person.
For more information about attending the tournament or dinner contact Cheryl or Danielle.
Some of the $5 Raffles include: Two night stay in Cape Cod, Signed Baseball (Joe Lackey), Jillian's Gift card for 25 guest, Signed Patriots Football jersey (Vince Wilfork), Sign Celtics Ball ( Jeff Green), Signed Football (Darias Butler) and much more! The $1 raffles include Brockton Rox tickets, Red Sox Basket, Pat's Basket, Bruins Basket, Wine Baskets, tickets to the Southwick Zoo, F1 Boston, Passes to Coco Keys, Texas Roadhouse Gift Card, Outback Steakhouse Gift Card, British Beer Comp, Movies Tickets and many more wonderful items.
Thank You to all our Sponsers: Wallpaper City, Randolph Eng, Hillcrest Construction, Michael Bourque, M.B.O.Precas, Inc., Hyde Park Savings Bank, The Paper Store, Al Courtney, Panzieri Construction, and The Law Office of Martin J. Murry
3rd Annual Pennies from Heaven Golf Tournament
April 16th 2011
Oakmont Green Golf Course - Hampstead, MD
If you missed the Pennies from Heaven Golf Tournament this year consider yourself LUCKY for dodging the rain but JEALOUS for missing a great time! Dave and Kim Larrick (proud parents of Ben Larrick) hosted the event at the Oakmont Green Golf Course in Hampstead, MD on a wet and windy Saturday, April 16, 2011. The event also provided a great opportunity for many Menkes families to come together, local Baltimore/DC area families in attendance included the Larricks, the Eckmans, and the Berlins.
Over 70 golfers showed up to play in the torrential downpour on Saturday but no one was hurt and everyone had a great time! Some teams made it through just 5 holes in the elements while other teams persevered through practically the entire course. Everyone was soaked, yet joyful! Many commented that “this was so memorable...such a great time...best year yet...so glad we played!" The tournament was made possible because of the hard work of 30+ volunteers. In addition to the golfers, other guests joined us for a silent auction, raffles, and a wonderful steak dinner. The
Larrick family and The Menkes Foundation are very thankful to the golfers, volunteers and silent auction donors who have been so committed to this cause over the last few years. For more pictures click here or the above picture.
Run for Hospice - 16th Annual Run & Fun Walk
April 16th, 2011
Despite rain and wind The Menkes Foundation once again fielded a great team in the Annual "Run for Hospice" 5K, 10K & Fun Run in historic Leonardtown, MD. This was the 5th year in which the foundation has participated in this wonderful charity event.
Our participation helped raise money for Hospice of St. Mary's so they can continue the mission of providing in-home care, comfort and support to terminally ill patients and their families in St. Mary's County. For race results and other information visit www.runforhospice.org.
Julie Eckman made The Menkes Foundation proud by winning first place in her age group. Everyone had a great workout, many pushing baby strollers for the 3 mile jaunt as they represented the foundation with bright blue Menkes T-shirts.
ATP7A-Related Copper Transport Diseases
— Emerging Concepts and Future Trends
A recent article in Nature Reviews/Neurology, Volume 7
By Stephen G. Kaler, MD, MPH
Abstract | This Review summarizes recent advances in understanding copper-transporting ATPase 1 (ATP7A), and examines the neurological phenotypes associated with dysfunction of this protein. Involvement of ATP7A in axonal outgrowth, synapse integrity and neuronal activation underscores the fundamental importance of copper metabolism to neurological function. Defects in ATP7A cause Menkes disease, an infantile-onset, lethal condition. Neonatal diagnosis and early treatment with copper injections enhance survival in patients
with this disease, and can normalize clinical outcomes if mutant ATP7A molecules retain small amounts of residual activity. Gene replacement rescues a mouse model of Menkes disease, suggesting a potential therapeutic approach for patients with complete loss-of-function ATP7A mutations. Remarkably, a newly discovered ATP7A disorder—isolated distal motor neuropathy—has none of the characteristic clinical or biochemical abnormalities of Menkes disease or its milder allelic variant occipital horn syndrome (OHS), instead resembling Charcot–Marie–Tooth disease type 2. These findings indicate that ATP7A has a crucial but previously unappreciated role in motor neuron maintenance, and that the mechanism underlying ATP7A-related distal motor neuropathy is distinct from Menkes disease and OHS pathophysiology. Collectively, these insights refine our knowledge of the neurology of ATP7A-related copper transport diseases and pave the way for further progress in understanding ATP7A function. To download a PDF of the full review click here.
4th Annual Colin Hayes Softball Tournament
August 13th, 2010
Hyde Park, MA
The 4th Annual Colin Hayes Softball Tournament was held to raise awareness of Menkes Disease. This 12 team, double elimination softball tournament featured prizes, raffles, auction items, a bake sale, and more. There was an early start to the day with teams competing on three fields. The games/teams were organized by Steve Benson and Jay Hayes, while a bake sale and cookout was organized by friends of Danielle Cimino, the mother of Colin.
A multitude of raffle items were available for guests, mostly collected by Colin's grandmother Cheryl. The softball tourament came down to an exciting finish with "Team Leahy" narrowly winning the crown by just one run and "Uncle Jesse's Team" finishing 2nd. A special thanks goes out to Cathy Gortz for being the official event photographer once again; to see pictures from the event click here.
Following the tournament a benefit dinner was held at The Holiday Inn of Dedham which was attended by over 150 people. After enjoying a wonderful dinner Danielle and Cheryl thanked everyone in attendance for their support. Jamie Eckman, President of the Menkes Foundation, echoed this gratitude to everyone for making Menkes awarness possible while Drew Eckman provided specific details on how funds will be used to promote awareness of this disease. Approximately $8,000 in proceeds were donated to The Menkes Foundation to help support the Menkes Awareness campaign. The funds raised from this tournament will be used to place a full page / full color advertisements in Emergency Medicine magazine.
Donations were made by the following individuals and organizations:
Karen Ouellette, Boston Red Sox, ATT, Chilies, Coca-Cola, Five Wits Boston, AAA, AAMCO, Accurate Heat/Air Services, Bayside Resort, BJ's wholesale, Boston College, Boston Duck Tours, Brockton Rox, The Center of Martial Arts, Fresh, Christmas Tree Shoppe, Clarks Trading Post, Coco Key Water Park, Cost Co's, Crew International Hair Salon, Dedham Community Theater, Edaville Railroad, Edible Arrangements, F1 Boston, Franklin Sports, George Wright Golf Course, Hair by Changes, Jillian's Boston, John Lackey (Red Sox), Kelly's Liquor, Kings Bowling, Manny Delcarman (Red Sox), Mark Herzlic (Boston College), Mark Steward (Bruins), New Hampshire Motor Speedway, Paw Sox, Rajon Rondo (Celtics), Rattlesnake Bar & Grill, Roche Bro's, Santa's Village, Ron's Ice Cream, Shawn Thornton (Bruins), Science Museum Boston, Shaw’s, Six Flags, Southwick Zoo, Stop and Shop, Riverside Theater Works, TGI Friday's, The Paper Store, Strawberry Patch Jewelry, The West Restaurant, The 10X Club, Whole Foods, Wallpaper City, Yard House Restaurant, and Trader Joe's.
Teams were sponsored by: Ashphalt Services, Orlando's Garage, Ver-Tex Construction Specialties Inc., Randolph Engineering, and Hillcrest Construction.
2nd Annual Pennies from Heaven Golf Tournament
April, 17th 2010
Oakmont Green Golf Course- Hampstead, MD
The Second Annual Pennies From Heaven Golf Tournament went off without a hitch this year! Dave and Kim Larrick (proud parents of Ben Larrick) hosted the event at the Oakmont Green Golf Course in Hampstead, MD on a cold and windy Saturday, April 17, 2010. The event also provided a great opportunity for many Menkes families to come together, local Baltimore/DC area families in attendance included the Larricks, the Eckmans, the Berlins, and the Locklears.
Adam Berlin and Ben Larrick had a good time playing together and feeling the love from lots of family and friends. Ben’s dad, Dave, won the longest drive contest, his godfather’s (Chris Larrick) team won first place, and his aunt (Amy Larrick Nicholson) won the ladies’ closest to the pin contest. The tournament, which had 104 golfers, raised an awesome $7,735 for The Menkes Foundation through a 50/50 raffle, a silent auction, and player donations. Many players expressed their excitement about the event and plan to play again next year. To see pictures from this years tournament click here or the above picture.
The Menkes Foundation would like to thank the Larrick's for pulling off this wonderful event as well as everyone who helped make it great. A special thanks also goes out to all the businesses & organizations who donated goods and services including: The Baltimore Orioles, The Washington Nationals, The Washington Capitals, The Washington Redskins, The DC United Soccer Team, Kindermusik, Michael Clark Photography, Black Ankle Wine, Greenstreet Plants, Photography by Becka, Laurienzo’s, Hair Impressions, Brick Ridge, I Love Grilled Cheese-Catonsville, Golf Galaxy, Shannon’s, Rafael’s Westminster, Castle Liquors, Mt. Airy Tavern, Paradise Nails/Tan and Tropic Nails.
The tentative date for next year’s tournament is set for April 23, 2011.
Start your Engines Race Fans!
May, 15th 2010
Old Dominion Raceway - Manassas, VA
In a partnership with David Polenz Racing, and team sponsor Sunshine Sneakers our foundation's logo will be proudly featured on the hood of the #33 David Polenz "Late Model Series" NASCAR on May 15th at Old Dominion Raceway in Manassas, Virginia. The Polenz team will be participating in the Twin 50 mile races.
Old Dominion Raceway is the home of Late Models racing. Late Model cars are FULL size NASCAR Nextel-Cup type cars with horsepower ratings of approximately 400 HP.
In addition to having our logo on the hood of the #33 Polenz Race Car, The Menkes Foundation will also have a display booth on-site to inform spectators about Menkes Disease. This area will have brochures as well as a variety of apparel and other items available to help promote awareness. There will be a silent auction of NASCAR collectible items to benefit our awareness campaign.
Tickets will be available raceday at the track for $15 for adults, $6 for youths, and entrance is free for children 5 years old or under. For more information about Old Dominion raceway visit www.olddominionspeedway.com.
The Menkes Foundation would like to offer a special thanks to Steve & Cari Britt who are the owners of the race track. The Menkes Foundation would also like to offer a special thanks to Jeff, Terry & David at Polenz Motorsports. To learn more about Polenz Motorsports or David's #33 race car visit www.polenzmotorsports.com. None of this would be possible without the efforts of Shannon & Jack Hill of Sunshine Sneakers. To find out more about Sunshine Sneakers visit www.sunshinesneakers.com.
Menkes Ad in The New England Journal of Medicine
February 11th, 2010
Recently The Menkes Foundation placed a full color / full page ad in the February 11th issue of The New England Journal of Medicine (NEJM).
Founded in 1812, this publication is the oldest continuously published medical journal in the world (198 years), and is considered by many to be the most widely read, and influential general medical periodical in the world. The Institute for Scientific Information rates NEJM the most-cited research journal in the world. For 2009 NEJM scored twice as high in impact factor as any other multispecialty medical journal.
NEJM has print editions for the United States, Canada, Japan, Europe and an International version. Approximately 150,000 subscribe to the journal in the United States. Approximate print and online circulation is 4,500 for Canada; 5,000 for Japan; 25,300 for Europe and 40,300 for International.
Advertising in medical journals is the primary channel through which our foundation seeks to improve awareness among the medical community.
The following is a letter written by a High School football player who decided to make a difference by having family and friends sponsor his acheivements on the field. The money he raised was donated to two chariities, including The Menkes Foundation.
Hello I am Peter Lang, age 15, a sophomore at Loch Raven High School in Baltimore, MD. I recently started a fundraising campaign for two great charities that could use your help. In this letter I will tell you about the reason for the fundraiser, about the charities, why I picked them, and how you can help.
On January 1st, 2010 I was confirmed in the Catholic faith. As part of my journey I had several parish, community, and family projects to complete. For my family project my parents and I came up with a fundraising idea. I asked people to sponsor me in my football season; to pledge money for every game, tackle, and/or sack. I then chose to donate the money to two important charities, Ed Reed’s Eye of the Hurricane Foundation, and the Menkes Foundation.
My Uncle Mike was my Confirmation sponsor and to thank him for his support I chose a charity that is very close to his heart, The Menkes Foundation. Before September 2007 we (including Uncle Mike’s family) had never heard of Menkes. But on September 19, 2007 my cousin Ben Larrick (Grandson of Uncle Mike) was born with Menkes. Menkes Syndrome is a disorder that affects copper levels in the body. It is characterized by sparse kinky hair, failure to gain weight, failure to thrive, and deterioration of the nervous system. Additional symptoms can include weak muscles, seizures, developmental delay, and intellectual disability. Most children with Menkes typically begin to develop symptoms during infancy and often do not live past age 3. (Genetics Reference www.ghr.nlm.nih.gov)
Ben was one of the lucky ones because he was diagnosed at a very early age (Read Ben’s story). The experimental treatment of copper shots that he receives twice a day seems to be working for him. He is a little behind the developmental curve, but he gets it done. He can sit, stand, crawl, feed himself, and talk. The future looks good for Ben. He is a pretty cool kid and I hope he will live a very long normal life. His Dad is a big Baltimore Ravens fan and I know he is looking forward to taking Ben to the games. I choose this foundation to help kids like Ben and their families. Because Menkes Disease is so rare, it does not get a lot of attention or funding for research and patient support. They need our support.
Last year was my first year to play football. Football has become my favorite sport to play, watch, study, etc. I live for football! I play DT (defensive tackle) for Loch Raven High School. Last season was my freshman year and after the first few games the coach made me a starter, and I played most of every game. Also I was to be the extra point kicker but most of the time we went for 2 points. Twice I was put in as a kicker and we ran a trick play, I ran the ball up the middle. The first time I scored two points, the second time I was not successful. I played in all eight games, starting in six. For the season I had 19 tackles, 3 sacks, and 2 points. My last game was my best game with six tackles. This year I hope to at least double my stats.
I’ll close with a few passages from the scripture of Matthew. Matthew 5:16 - “Just so, your light must shine before others, that they may see your good deeds and glorify your heavenly Father.” Matthew 19:21 - Jesus said to him “If you wish to be perfect, go, sell what you have and give it to the poor, and you will have treasures in heaven. Then come follow me.”
(More information is coming soon about how you can sponsor Peter next season!)
Under Armour Baltimore Half Marathon
October 10th, 2009
On October 10th, 2009 supporters of The Menkes Foundation participated in the Under Armour Baltimore Half Marathon to raise money and awareness for the fight against Menkes disease.
Eva Thompson (pictured on left) and Brian Nicholson (not pictured) both took on the tough challenge of competing in this long distance (13.1 mile) race. For both Eva and Brian their training and endurance paid off with Eva completing the race in 2 hours & 25 minutes, and Brian crossing the finish line in 1 hour & 56 minutes. The most wonderful part of these athletic acheivements is that both ran in honor of Menkes children everywhere; Eva raised $310 and Brian raised $803, for a combined $1113 to support our Menkes Awareness campaign. Their heroic efforts will help us educate the medical community about Menkes disease so that every little boy who suffers from this disease gets the treatment and quality of life that they deserve.
As the uncle of Benjamin Larrick, Brian participated in his nephew's honor after being inspired by his wife Amy who recently completed a triathlon for Ben. Brian later said "We were more than happy to contribute to a cause that could help children like Ben." Eva, who is a friend and co-worker of Jamie Eckman, ran the race in memory of Jamie & Drew's son Wesley Quinn Eckman.
Menkes Ad in JAMA:
The Journal of the American Medical Association
Recently the Menkes Foundation placed two full color / full page ads in the August 5th & 12th issues of The Journal for the American Medical Association (JAMA). This publication is the world's largest medical journal, with each issue reaching an estimated 330,000 members of the medical community, including physicians, nurses, as well as the faculty and students of top medical schools.
JAMA is an international peer-reviewed general medical journal, published 48 times per year by the American Medical Association. JAMA is the most widely circulated medical journal in the world. Founded in 1883 by the American Medical Association and published continuously since then, JAMA publishes original research, reviews, commentaries, editorials, essays, medical news, correspondence, and ancillary content. JAMA has also been published in over 20 languages. For additional information on JAMA's circulation click here.
Currently steps are being taken to place advertising in The New England Journal of Medicine, another prominent medical journal. Click here to see the full size JAMA Ad.
Aflac Iron Girl Triathlon
August 23rd, 2009
On Sunday, August 23rd, 2009, Amy Nicholson, the Aunt of Benjamin Larrick, participated in the Aflac Iron Girl Traithlon in honor of her nephew Ben. Amy took the time to have a custom jersey made for the race which featured both The Menkes Foundation logo and the words "Inspired by Benjamin Larrick".
The Aflac Iron Girl National Event Series not only encourages women to achieve their personal best but also raises awareness of childhood cancer research and treatment.
Her determination to successfully complete this grueling race has also inspired some of her friends and family take on an equally difficult challenge by participating in the Under Armour Baltimore Half Marathon on October 10th, 2009. We will let you know how the participants of the half marathon do in a future story. To see more pictures of Amy's triathalon click here.
Colin Hayes Weymouth Softball Tournament
August 15th, 2009
On August 15th, 2009, the Colin Hayes Weymouth Softball Tournament was held to help raise awareness of Menkes Disease. This tournament was held at O'Sullivan's field in Weymouth, MA. 9 teams competed and Jay's team won...Finally! There were about 40 individual raffles, a variety of food & drinks, and shirts with the tournament logo were for sale.
Dinner followed at the Wessagussett Yacht Club, in North Weymouth. Meals were prepared by May (Colin's grandmother) and the club's chef.
Baby Jacob and family, drove over four hours to attend the tournament and the event planner graciously donated the profits from the 50/50 raffle to help cover their expenses. This tournament raised approximately $3,000 toward The Menkes Foundation's Awareness campaign. The funds raised from this tournament will be used to place advertising in The New England Journal of Medicine.
3rd Annual Colin Hayes Softball Tournament
August 8th, 2009
Hyde Park, MA
On August 8th, 2009, the 3rd Annual Colin Hayes Softball Tournament was held to help raise awareness of Menkes Disease. This 12 team, double elimination softball tournament featured prizes, raffles, auction items, crafts table, bake sale, free childrens books, facepainting and more.
The day started out at 7:30am with the teams competing on three feilds. The bake sale was run by Danielle's friends, who volunteed to help out during the event. Over 50 raffle items were available, many collected by Colin's grandmother Cheryl, including gifts from the Red Sox, Celtics, Patriots and more. Contributions were also made by local businesses including Hair by Changes, Ron's Gourmet Ice Cream, Boston College, Pawtucket Red Sox, Brockton Sox, Connecticut Sun, Read Boston Reading Trail, Christmas Tree Shops, Clark's Treading Post NH, Uno's Chicago Grill, Wallpaper City, 5 Wits Boston, men's Wearhouse, Roche Bros, Shaw's, Richard's Wine & Spirits, Lank's Liquors and Jillian's Boston.
There were also several children's activities, including facepainting, a bubble table, a moon bounce and free books from Read Your Way to Fenway. Steve Benson, who volunteers his time each year to help organize the event, was happy to finally be part of the winning team.
Thomas M. Menino, the Mayor of Boston, and a resident of Hyde Park, attended the event, taking part in the festivites. Following the tournament a benefit dinner was held at Vinny T's of Dedham where almost 150 people enjoyed wonderful food & drinks as well as dancing and the awards ceremony. Approximately $9,000 in proceeds were donated to The Menkes Foundation to help support their Menkes Awareness campaign. To see the newspaper articles written about the tournament click here.
The Menkes Foundation's Awareness campaign is specifically designed to educate members of the medical community, so they can more easily diagnose this terrible disease. Early diagnosis leads to an improved quality of life for boys who suffer from the disease. The funds raised from this tournament will be used to place advertising in The New England Journal of Medicine.
April & May, 2009
Two families, in two separate cities, the Waddington’s from Woodstown, NJ and the Eckman’s from California MD, gathered up some belongings they were no longer using and hosted yard sales to benefit The Menkes Foundation. Each gave brochures and educated patrons on the effects this disease has on little boys.
Both families also provided some insight on how dealing with the disease emotionally can affect the child's loved ones. Kare Waddington also went the extra mile by selling our recycle tote bags to those who wanted to promote awareness as well. The total amount raised was $184. A heartfelt thank you to both families!
Menkes Ad in Peds:
The Official Journal of the American Academy of Pediatrics
The Menkes Foundation has continued it's advertising campaign with the 4th full page advertisement in the American Academy of Pediatrics. This time the full color advertisement was prominently featured in the front of the journal right next to the table of contents.
The journal has a circulation of over 66,000 readers, comprised mostly of physicians working in the field of Pediatric medicine. Of the physicans, 84% of them see at least 50 patients per week and 41% of the physicians see over 100 patients per week. The Menkes Foundation considers pediatricians the front line when it comes to diagnosing Menkes children as quickly as possible. Raising awareness of this disease among the medical community translates into an improved quality of life for those who suffer from this disease by getting them the treatment they need. Click here to see the full size ad.
Run for Hospice - 14th Annual Run & Fun Walk
April 18th, 2009
The Menkes Foundation was proud to have 30 participants out to enjoy the beautiful spring weather at the 14th Annual Hospice 5K, 10K and Fun Run in historic Leonardtown, MD. This was the 3rd year in which the foundation fielded a team at this event.
Supporters of The Menkes Foundation were highly visable wearing their matching light blue shirts to show their support of community hospice. This event was also successful at raising community awareness of Menkes disease as information about our disease was available to the one thousand plus runners and walkers. Each participant received an educational Menkes brochure in their race packet which informed them about the signs and symptoms of the disease.
To see more pictures of the event click here. If you would like to find out more about the run or Hospice of St. Mary's visit www.runforhospice.org.
The "Pennies From Heaven" Golf Tournament
April 4th, 2009
On a brisk Saturday afternoon near Baltimore, MD one hundred & five golfers and twenty-five volunteers took to the greens at Oakmont Green Golf Course to raise awareness of Menkes Disease.
The Menkes Foundation would like to thank everyone who helped make the first Pennies from Heaven Golf Tournament a huge success.
Most importantly, the organizers of this event, Kimberly Kirkpatrick Larrick, and her husband David Larrick did a remarkable job of the making the event fun for everyone in attendance. As proud parents, Kimberly and David organized the event in honor of their son Benjamin who suffers from Menkes Disease.
Kimberly and David came up with the name Pennies from Heaven because it raised money but also because Ben receives copper injections to treat the disease, which is how they coined the term! Ben wasn't the only Menkes child in attendance as Heidi Belyea-Berlin and her son Adam also came out to brave the cold windy day. Both boys impressed all in attendance with their determination to fight this disease.
Members of the Menkes Foundation were also in attendance in order to help educate the golfers about Menkes disease through the use of a large display and informative brochures. Promotional items such as T-Shirts, Golf Shirts and Tote Bags were also for sale in order to help spread information about this disease to the community. The Foundation's ability to promote awareness (through advertising in medical journals and radio) is only possible because of supporters like the Larricks and events like this tournament, which raised over $7000.
The event was so successfull the Larricks have already set a date for next year's tournament on April 17th, 2010. The competition is sure to be fierce once again as a number of talented teams are sure to be back. Among the winning teams this year were Shanks for Playin' (1st place gross), First Agenda Nat'l Bank (2nd place gross), Team 20 (3rd place gross), Half & Half (1st place net) and Team 25 (2nd place net). The winners had the option to choose from a large assortment of high quality prizes. Some of the prizes included gift cards and golf equipment as well as autographed sports memorabilia from local teams including the Washington Capitals, the Washington Nationals and the Baltimore Orioles.
To see pictures from the Pennies from Heaven Golf Tournament click here!
Quilt Raffle Winner
March 31st, 2009
The Menkes Foundation would like to thank everyone who participated in the March Quilt Raffle! The quilt was created by several members of a local quilting club made up by nurses from St. Mary's Hospital's OB department. Additional work was performed on the quilt by a local Mennonite woman who specializes in this intricate art form.
The instructor of the quilting club, Teresa Andresik, had the pleasure of drawing the winning ticket, and it was with great anticipation that the quilt club members waited to hear the name read aloud. Fittingly the holder of that ticket, Kathy Latham, is also an employee of St. Mary's Hospital's OB department, which also happens to be where the majority of the tickets were sold. The raffle for the quilt raised approximately $900 towards our Menkes awareness campaign, including advertising in The Pediatric Journal which circulates to 60,000 members of the medical community.
The 7' x 8' quilt is made up of thousands of stitches and beautiful blue and copper colored fabric depicting stars in the night sky. To see a picture of the quilt and the lucky winner click here.
Facing Fears at the National Marathon
March 21st, 2009
Julie Eckman, a resident of Arlington, Virginia, not only braved the cold and blustery early spring day but faced one of her biggest fears by participating in the SunTrust National Marathon held in our nation’s capital on March 21, 2009. Growing up in a family of runners, Julie always worked hard to accomplish her personal goals, and running 26.2 miles was no easy feat. She trained through brutal winter weather on days so cold she could barely feel her hands or feet. The silver lining to this difficult training regimen was the beautiful scenery of her local neighborhood.
Julie sacrificed her time and energy and promised to do her very best by completing the race in memory of her nephew Wesley Quinn Eckman, who passed away from Menkes Disease in November of 2006. When asked why she decided to do this, her response was “while Wesley only lived for a short time his battle for life taught me about strength and perseverance in the most unimaginable circumstances. It’s because of Wesley that no matter how hard it gets out there, I know I have it in me to push through the pain.”
Friends and family of Julie showed their support, not only for her, but also for the good of The Menkes Foundation, by pledging money to help promote awareness. Julie’s goal was $700, but in the end she doubled that by raising over $1400. Amazingly, Julie finished her very first marathon in just over 4 hours. It was a day of mixed emotion for Julie’s family as they watched her cross the finish line with the most admirable look of determination on her face.
As Wesley’s mother, Jamie Eckman was unable to hide her tears of sadness that Wesley was not here to witness his aunt’s wonderful accomplishment. Jamie & Drew Eckman were both filled with joy when Julie showed them picture of Wesley that she had carried throughout the race. To see pictures from Julie's run at the SunTrust National Marathon click here.
Baby Carson's 2nd Annual Fundraiser
February 28th, 2009
The Founders of The Menkes Foundation, journeyed out to Olathe, KS to support the family of Carson Bowman in their annual fundraiser to help raise money for his medical expenses. The event, held at the local Holiday Inn, was kicked off by a silent auction of many wonderful items to bid on, which were all donated by local friends and businesses. An Italian inspired buffet dinner was enjoyed by all while Dr. William Graf, Carson's pediatric neurologist, and Drew & Jamie Eckman gave informative speeches about Menkes disease.
The event was also attended by Anthony Davis, a retired NFL player, who donated his time to have his picture taken along with his Raven's Super Bowl XXXV ring to help raise more money for Carson. The magical evening was concluded with a Texas Hold 'em poker tournament, which lasted far into the night. This event took the place of the annual Menkes gala that is usually held in California, MD, where Drew and Jamie reside.
This event helped support the goal of The Menkes Foundation, which is to
educate communities by promoting awareness of Menkes disease all over the country. The invitation to attend Carson's fundraiser was a wonderful privelage, especially the ability to meet new friends and supporters of the foundation. The foundation received donations, including the sale of t-shirts and awareness pins, which totaled $1200. To find out more visit Carson, or to see pictures from the event click here!
Giovanni's Memorial Menkes Dance & Fundraiser
February 27th, 2009
Idaho Falls, ID
On February 27th, 2009, Liliana and Cosme Sanchez from Idaho Falls, Idaho had a Dance & Fundraiser to honor their Son Giovanni Sanchez, who suffers from Menkes Disease.
The most important function of the event was to spread awareness of Menkes to the local Hispanic Community. To promote the event Liliana had a interview with a Hispanic radio station La Super Caliente, and with the Hispanic TV channel TeleMundo. She talked about Menkes, her Son Giovanni, and the goal of The Menkes Foundation, which is to promote awareness with the hopes of finding a cure for Menkes disease. After the interviews the Dance drew in more than 300 people. Throughout the night supporters in attendance danced and and enjoyed themselves. Veronica Perez, a well known Latino musician dedicated a moment of silence to Giovanni, she then dedicated a song to Giovanni appropriately named "Hero". This song was also dedicated to all the other Little Angels that have had suffer from Menkes.
The Dance raised approximately $1900.00 and from that 1500.00 was sent to The Menkes Foundation to help raise awareness of Menkes and $400.00 to Carson Bowman to help on their annual fundraiser. A big thank you goes out to Las Pulgas Inc., Veronica Perez, and Grupo Desafio who really helped to make this event special for everyone who had the oppurtunity to attend. (pictures)
In Memoriam: Dr. John H. Menkes (1928 - 2008)
November 22nd, 2008
Los Angeles, CA
Dr. John H. Menkes, the pediatric neurologist who identified Menkes disease and other congenital disorders of the neural system died November 22nd at Cedars-Sinai Medical Center in Los Angeles of complications of cancer. The Menkes Foundation is grateful for his contributions to the field of medicine, and his research of rare diseases. He will always be remembered by those who continue the fight against Menkes Disease.
To learn more about Dr. John H. Menkes and his pioneering acheivements in the field of medicine visit the Los Angeles Times.
Sponsorship of the Hatch Shell Concert Series
August 14th - September 17th, 2008
The Menkes Foundation recently sponsored Radio WCRB Boston's Hatch Shell Concert Series, which consisted of several classical concerts held in Boston, MA. The sponsorship of these concerts provided the foundation with an excellent opportunity to air 200 "Menkes Awareness" radio advertisements on Classical 99.5 WCRB Boston.
This sponsorship cost translated to roughly $75 per advertisement, however advertising on comparable stations would have ranged between $150 to $350 per ad. Pictures from the event can be viewed by visiting WCRB's website. Listen to the ad using the radio controls on the left.
Research was conducted by the foundation to find an effective method of advertising to Boston's prestigious medical community and classical radio was found to have one of the highest percentages of listeners with Medical and Post Graduate degrees. The Boston community has been a top fundraiser to the foundation however plans are in the works to broadcast our ad in other locations.
2nd Annual Colin Hayes Softball Tournament
July 12th, 2008
Hyde Park, MA
Another successful event was lovingly hosted by Steve Benson to help raise funds and awareness of Menkes disease in honor of 2 year old Colin Hayes. Nine teams competed in a double elimination softball tournament that began at 8 am and did not end until 7 pm that evening. The Menkes Foundation was represented by Drew & Jamie Eckman, and Lance & Tina Locklear to hand out educational materials and awareness items.
Those in attendance enjoyed donated baked good as well as food from the grill while children played at the "Moon Bounce" and softball toss. During the games, maternal grandmother Cheryl Cimino, managed a raffle that included 42 gift basket prizes ranging from autographed Red Sox memorable items to custom made gourmet treats. The winners of the raffle were announced later that evening at a dinner hosted by friends and family of Danielle and Baby Colin.
The winner of the 50/50 raffle, Robert Hayes, generously donated his winnings to the Menkes Foundation without a moment’s hesitation. The winner of the softball tournament, “Team Powers” (white shirts), walked away with not only bragging rights but a custom framed certificate bearing Colin's name and The Menkes Foundation logo. For pictures of the event click here.
The Softball Teams included:
"Team Kevin" (In Memory of Kevin Jacob Festa) - Yellow shirts
"Team Hayes" (In Honor of Colin Hayes) - Red shirts
"Those Guys!" - Maroon shirts
"The Cottage"- Light Blue shirts
"Team Jesse" - Green shirts
"Bad News Bears" - Navy Blue shirts
"Team Powers " - White shirts
"Dirt Dogs" - Brown shirts
"Hillcrest" - Grey shirts
June 14th 2008
Supporters of The Menkes Foundation and loved ones of baby Carson recently held a fundraiser in Carroll, Iowa to raise money for Carson's medical expenses as well as to raise awareness of this disease. The night was full of fun things to do including kids games, Bingo, Wii video games, great food, silent auction, raffle prizes, and 52 poker players tried their luck for some awesome prizes. Congratulations to the winners of the Lake Tahoe vacation, Poker, Raffle and Silent Auction.
Everyone had a great time and a BIG thanks goes out to all who offered support, especially those who couldn't make it but donated anyways. Thanks to everyone who helped plan the event and to those who donated prizes. A special thanks to Kari for organizing and really making this event happen!
To find out more visit Carson!
Rob & Christine's Wedding
June 7th, 2008
Friends of The Menkes Foundation are always coming up with new ways to raise awareness of Menkes disease. One of the most creative examples of this took place at the wedding of Rob & Christine. Instead of party favors at each table all 190 guests received our Menkes Foundation lapel pin attached to a card with our website address. Members of the wedding party also wore the pin during the event.
We are very thankful to Rob & Christine for this very kind gesture as well as the donation we received to cover the cost of the pins. We wish you all the happiness marriage life can bring!
The Menkes Foundation's Second Annual Gala
May 24th, 2008
Solomons Island, MD
The Menkes Foundation hosted its second annual Gala on May 24, 2008. There were 105 guests in attendance who raised approximately $4,000 for our Menkes awareness campaign.
The evening kicked off with cocktail hour where guests were encouraged to bid on several silent auction items which were donated by local business and individuals.
Following cocktail hour an informal speech was given by our guests of honor, Sarah & Jeff Bowman as they shared the day-to-day struggles of caring for a Menkes child, their beautiful son Carson Bowman, who was also in attendance. After the Bowman's speech the guests enjoyed a wonderful four course meal. Each dinner table featured red, white & blue decorations and "M&M" candies as party favors to celebrate the Memorial Day holiday. Each of the candies was enscribed with the words "Fight Menkes".
Following dinner a speech was given by Drew Eckman, The Menkes Foundation's Vice President to explain how donations were being used to raise awarness. Jamie Eckman also covered this topic in her recent letter, "Message from the President". Following Drew's speech Jamie thanked all in attendance before her sister Amie and cousin Alycia announced the winners of the silent auction items. The rest of the evening was spent enjoying music and dancing the night away. If you would like to see pictures from the event click here.
Run for Hospice - 13th Annual Run & Fun Walk
April 19th, 2008
The Menkes Foundation had the largest team for the 13th Annual Hospice 5K, 10K and Fun Run in Leonardtown, MD with 52 participants.
With the support of friends, family and coworkers of Drew and Jamie Eckman, co-founders of the Menkes Foundation, $1275 was raised in support of Hospice and $200 went towards our awareness campaign for Menkes Disease.
To see more pictures of the event click here. If you would like to find out more about the run or Hospice of St. Mary's visit www.runforhospice.org.
Menkes article in St. Mary's Ryken High School Alumni newsletter
The Alumni newsletter of St. Mary's Ryken High School featured an article about the Menkes Foundation. As co-founder of the foundation and a Ryken Alumni Ryken, Drew Eckman recently shared his story with the school. To read the article click here. To find out more about St. Mary's Ryken High School visit www.smrhs.org.
Menkes Screening Test Developed for Infants
Screening could identify newborns at risk for rare Menkes disease
BOSTON - Doctors say they have developed a screening test for deadly Menkes disease so patients with the genetic defect can receive copper injections.
A team led by Dr. Stephen Kaler of the National Institute of Child Health and Human Development in Bethesda, Maryland, said the test identified 46 out of 81 infants at risk for the rare condition, which causes seizures, stunted growth, mental retardation and kinky hair.
Twelve of the 46 began receiving copper-replacement therapy within three weeks of birth, the researchers reported in the New England Journal of Medicine. They said 92 percent were alive after nearly five years. Historically, fewer than 13 percent are alive after two years if treatment has been delayed. Menkes disease is often missed because normal newborns also can have low copper blood levels.
In addition, affected infants appear healthy at birth and they do not begin to develop symptoms for six to eight weeks. By then it can be too late for daily copper injections to be effective.
Foundation in West Virginia Wesleyan College's Alumni Newsletter
West Virginia Wesleyan College recently featured
an article about the Menkes Foundation in the
school's Alumni newsletter. As Alumni of WVWC Drew & Jamie Eckman, the founders of the Menkes Foundation, recently shared their story with the college.
Drew & Jamie named their son Wesley Quinn Eckman after the school, which is the place where they originally met.
The newsletter reaches thousands of WVWC Alumni and will raise awareness of this terrible disease. To read the article click here.
Menkes Public Service Radio Announcement
Supporters of The Menkes Foundation have developed a Public Service Announcement (PSA) to run twice a day of five radio stations in Jacksonville, FL. In the future we hope to have this PSA run on radio stations throughout the country. Use the audio controls on the left to hear the PSA.
Menkes Awareness Day
November 30th, 2007
Supporters of The Menkes Foundation held "A Night of Remembrance" at various locations on the evening of November 30th, the last day of Menkes month. This activity consisted of a dinner, a candle lighting, and a prayer in memory of every child who has suffered or continues to suffer from this disease. Click here to see how our supporters choose to celebrate the evening
We encourage you to send us a photograph of your gathering if you would like us to post it here on the news section of our website.
Menkes Ad in Peds:
The Official Journal of the American Academy of Pediatrics
October 1st, 2007
The Menkes Foundation is launching its advertising campaign with a full color / full page advertisement in the October issue of the Official Journal of the American Academy of Pediatrics!
The journal has a circulation of over 66,000 readers, comprised mostly of physicians working in the field of Pediatric medicine. Of these physicans 84% of them see at least 50 patients per week and 41% of the physicians see over 100 patients per week. Click here to see the ad.
Menkes Awareness Cook-out
September 30th, 2007
St. Louis, Missouri
Supporters of the Foundation gathered for a Menkes Awareness Cook-out in St. Louis, MO. What started out as a small function for people to enjoy a meal and learn about Menkes became a huge success. The event raised $2190.63 to be used towards our Menkes Awareness campaign. The local Fire Department even made an appearence, peaking interest of those who passed by. Menkes brochures, a Menkes display and a local Pediatrician helped educate those who attended.
The event was planned by Jackie and John, the proud parents of James who is featured on our "Menkes Friends" page. For pictures of the event click here.
Tax Exempt Status Approved
September 26th, 2007
The Menkes Foundation has been granted exemption from federal income tax under section 501(c)(3) of IRS tax law. The Menkes Foundation is covered under section 501(c)(3) as non-profit organization. This is great news as it allows us to use 100% of your donations towards awareness of Menkes Disease.
Pampered Chef Fundraiser
Thank you to everyone who supported The Menkes Foundation by placing an order with The Pampered chef. The event generated over $200 in funds which will be used to advocate awareness as The Pampered chef donated 15% of the proceeds to the foundation.
1st Annual Colin Hayes Softball Tournament
August 18th, 2007
Hyde Park, Massachusetts
The 1st Annual Colin Hayes Softball Tournament raised $11,242 towards our awareness campaign. Danielle, the mother of Colin Hayes, planned the event which featured 10 softball teams participating for prizes in a double elimination tournament. The participants also enjoyed dancing, playing horseshoes and a dinner during the awards ceremony.
Of course the guests of honor were Colin Hayes and his mommy Danielle! Click here to see pictures from the 1st Annual Colin Hayes Softball Tournament.
The Menkes Foundation Gala
May 26th, 2007
Lexington Park, Maryland
The Menkes Foundation hosted its first fundraiser event, a dinner and dance on May 26, 2007. There were 148 guests in attendance who raised $10,000 for our Menkes awareness campaign. The awareness campaign consists of placing Menkes informational advertisements in medical journals, attending medical conferences, and producing thousands of brochures and specialty items such as pens and T-shirts to get the word out about the disease and our website.
The evening kicked off with cocktail hour where guests were encouraged to bid on 6 silent auction items. Following cocktail hour was a four course meal and a informational speech given by Dr. Clesson Turner on Menkes
disease. A slide presentation of our son Wesley Quinn Eckman was shown with a surprise video clip of him when he was 4 months of age. We ended the evening with a dance in honor of those who have passed on from Menkes as well as those who are fighting the disease daily. If you would like to see pictures from the event, click here.
Each dinner table featured a baby blue hydrangea floral arrangement. To each we attached a tag bearing the name of a beloved boy to be honored and/or remembered. The guest with a birthday closest to that on the tag was encouraged to take the arrangement home to always remember those affected with Menkes. The guests were touched beyond words to accept this small token of our appreciation for supporting the works of the foundation.
The Menkes Foundation at the 12th Annual Run For Hospice
April 21st, 2007
Supporters of The Menkes Foundation took part in the 12th Annual Run For Hospice (5K & 10K runs) to promote the foundation and to raise awarness about Menkes disease.
Each member of our team wore a T-Shirt with the Menkes Foundation logo on it and a picture of Wesley. We were able to speak with those curious about the foundation and give them some information about Menkes disease.
For more information about the Run For Hospice visit: www.runforhospice.org
April 4th, 2007
The Southern Maryland newspaper "The Enterprise" recently featured an article about Wesley Quinn Eckman. Wesley was a beautiful little boy who lost his battle with Menkes, inspiring his parents, Drew & Jamie Eckman to start the Menkes Foundation. This article will help spread awareness & information about Menkes disease. Click here to read the article.