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.

Football Fundraising!
February, 2010
Baltimore, MD

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.”

Peter Lang
(More information is coming soon about how you can sponsor Peter next season!)

Under Armour Baltimore Half Marathon
October 10th, 2009
Baltimore, MD

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
August, 2009

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
Columbia, MD

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
Weymouth, MA

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.

Yard Sale!
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
April, 2009

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
Leonardtown, MD

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
Hampstead, MD

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
California, MD

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
Washington, DC

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
Olathe, KS

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.

Radio Advertising
Sponsorship of the Hatch Shell Concert Series
August 14th - September 17th, 2008
Boston, MA

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

Carson's Fundraiser
June 14th 2008
Carroll, IA

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
Philadelphia, PA

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
Leonardtown, MD

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
March, 2008

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
February, 2008

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
November, 2007

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
November, 2007

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
September, 2007

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
Leonardtown, Maryland

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

Wesley's World
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.