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August, 2013

A little late is better than never, right? I would like to start this overdue update by saying how humbling the past few years have been serving as a liaison between so many amazing Menkes families and those dedicated to researching and caring for our boys affected with this dreadful disease. Seven years ago when we first heard the word “Menkes,” it was several months before I was placed in contact with another mother walking the same journey. Today, I can proudly say that fellow Menkes mother Tina Locklear and I no longer feel alone, now that we are part of a Menkes community of over 250 members sharing the same trials & triumphs that we experienced with our angels. In addition to these families, The Menkes Foundation’s Facebook page now has over 1500 followers and supporters of our efforts!

As President of the Menkes Foundation, I have had the honor of sharing our son’s story with family and friends at fundraising events, educating medical professionals eager to learn about this rare disease, and most importantly, serving as a shoulder of comfort not only for Menkes families, but to those who have a child inflicted with other rare, genetic diseases. In April 2013, I had the greatest privilege thus far: an invitation to speak at a two day International Workshop of Human Disorders of Copper Metabolism at the prestigious John’s Hopkins University. Within five minutes of one of the key organizer’s opening remarks, I found closure on why our Wesley only lived 11 months instead of the average two years life span. As reluctant as I was to attend such a high profile conference, I knew in that moment I was right where I needed to be - so I could walk away with a better understanding of the physiology of this copper disease.

At the conference, I had the pleasure of meeting Stephen G. Kaler, MD, Senior Investigator of the Molecular Medicine Program at the National Institute of Health in Bethesda, MD. After seven years of emails and phone calls, I was finally able to place a face with the name. The two day event concluded with the Patient Advocate Panel that I served on, along with fellow Menkes mother Allison Delano and six health care educators. Never have I felt so intimidated to share my insight as I did in that auditorium full of truly the most intelligent scientists using their gifts and passion for copper research. As part of this panel, I tried to provide some much needed perspective on how caring for children afflicted with Menkes affects the families involved. At the conclusion of the panel we were all awarded with a standing ovation for our equally passionate dedication for advocating awareness.  

Over the last six years, the focal point of the foundation has been to increase awareness of Menkes disease, so that early diagnoses of afflicted newborns will allow these children to have the best possible quality of life. Our print advertising campaign has helped us reach hundreds of thousands of medical workers who have learned about the disease through our advertisements in publications such as the Journal of the American Medical Association (JAMA), The New England Journal of Medicine, The Journal of Pediatrics, Emergency Medicine News, Emergency Medicine Magazine, The Journal of American College of Obstetricians and Gynecologists (ACOG), Cell Medical Journal and The American Journal of Human Genetics. This advertising campaign, in conjunction with our website, has not only helped us reach medical workers, but also families around the globe who are eager to help us with the fight against Menkes. Some families even benefited directly from this advertising campaign with an earlier diagnosis for their son.

The campaign also gave us the opportunity to act as a resource for those overseas wishing to start organizations such as Menkes UK (www.menkesfoundationuk.com) and Menkes Australia (www.menkesaustralia.org.au). Unfortunately, the cost of advertisements in print publications is prohibitively high; therefore future awareness efforts will concentrate on the use of web and social media, including our Facebook website, Facebook ads, and Google Ads & AdWords. The foundation will continue to maintain a presence with the medical journals by placing banner ads on their websites at a much lower cost than traditional print advertisements.

Now, The Menkes Foundation is ready to enter the next phase of the fight by Donating to Research Studies. The Menkes Foundation will donate the majority of all future proceeds to Menkes research projects at major medical institutions, while simultaneously continuing our online awareness advertising campaign. This decision is based on our belief that awareness of Menkes has drastically improved as a result of the foundation’s mission, resulting in both an increase in referrals and in inquiries by scientists currently researching copper deficiencies. We believe the technological advances in medical science have also improved, allowing our donated funds to have a greater probability of success in improving treatment modalities.
In conclusion, there are many people we must acknowledge for their contributions to the success of the foundation and its continued growth. A special thanks to Danielle Ciminio and her mother, Cheryl Wallace, who sponsor an annual softball tournament and dinner with creative raffles in honor of Colin who is now 7 years old. Another equally passionate and dedicated family, Dave & Kim Larrick from Mt. Airy MD, coordinate an incredibly fun annual golf outing, followed by dinner and a silent auction in honor of their son Ben who is 5 years old. In addition to these big events, other Menkes families, such as the Bowman family and Amy DeMeyer, have supported the foundation with donations. Many other loyal and supportive Menkes families have also made a huge difference as donors and as customers of our Menkes Awareness Store.

We would also like to say a special thank you to our parents who have stood by our sides, both emotionally and financially, since we laid our angel to rest. Even more deserving of a shout out is my very talented husband Drew.  We would be at a standstill in our efforts without his expertise in graphic design, and business savvy, as he has reduced overhead costs for the website and helped select the most cost effective advertising plans. With each day that passes without our Wesley and the many boys who have joined him over him the years, we more firmly believe that their voices are being heard loud and clear and that their memory will live on forever.

Warmest regards,

Jamie S. Eckman
The Menkes Foundation

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