Saving my brother from Duchenne muscular dystrophy



There’s no other way to put it—my 24 year old brother, Terry, is desperately sick.

Terry was diagnosed with Duchenne muscular dystrophy, a rare fatal genetic condition that robs boys of muscle. They become wheelchair-bound at a young age, forced onto a ventilator, and eventually develop heart failure. Terry could be your child or brother or grandson. This disease strikes with no regard and there is no cure... yet.

Terry, age 10, with my family at the Central Park zoo in 2007

As kids, my brother and I would spend our days playing catch outside in rural upstate New York and playing our favorite Star Wars video games together. That all began to change as my brother grew - rather than playing catch or taking walks together, we would stay inside more. As a kid, you're not conscious of these small changes. That all changed when we  heard the news every brother and parent fears - that my brother had Duchenne muscular dystrophy. The moment is forever seared into my memory. At first I was in denial - this couldn't be real. It's easy to hideaway as the disease moves slowly at first. That denial turned into anger, fear and hopelessness. As I grew, those emotions transformed into a hard determination to end this disease. To work with others to make sure it took no other life, least of all my brother's. 

28982540_1528735659603359_r.jpegTerry and I at "Star Wars Celebration", 2004. 

My family and I were given no hope when Terry was diagnosed with the Duchenne. But we discovered that scientists are just now beginning to be able to fight back against genetic diseases like Duchenne. So, we fought day and night and have raised over $150,000 to fund the science that could lead to a cure. But more is needed. 

Terry is declining every day. Our team of scientists is working around the clock to make this treatment happen as soon as humanly possible. But Terry’s, and the boys like him, future is still grim so we urgently need to raise money to do the impossible - to push a groundbreaking treatment forward, quickly, and develop an effective therapy to help my brother and many other boys and young men like him. If we fail to raise the money needed, all hope for this therapy will be lost. 

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YOU CAN HELP SAVE MY BROTHER 
1) GIVE whatever you can. No donation is too small (tax-deductible)
2) SHARE on social media
3) EMAIL this page - www.gofundme.com/campaigning-for-a-cure  - to your family + friends. 
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Terry’s, and the boys like him, story doesn't end here! YOU can continue to help us fight for his life. You can help make a difference in this battle. Help us raise the $500,000 we need to save my brother and the young men like him!

Our first milestone is to raise $100,000 for conduct analysis on Terry's cells and create a cell line to test potential therapeutics against
Our second milestone ($200,000) is to construct three candidate drugs that our researchers predict will be efficacious for Terry
Our third milestone ($100,000) is to test the lead candidate against Terry's cell line & mouse model 

With gratitude and great urgency,
Rich & family

28982540_1528734850932425_r.jpegMy brother Terry and I at graduation, 2018. 

 
TIME IS RUNNING OUT
Please help give Terry a second chance at life before it's too late. No words can describe watching Terry lose the ability to walk. He still has his laughter and excitement for life. We know this too will soon start to fade. But, the path to a cure exists. We're racing against time and money is our only barrier

 
WHERE YOUR MONEY IS GOING
Cure Rare Disease (previously Terry's Foundation) is a 501(c)(3) nonprofit organization.  Our mission is to fund a groundbreaking treatment for Duchenne with the goal of reversing its effects and ending it forever. We are currently racing against time to fund a cutting-edge treatment we are developing with the very best in the field. But saving lives is expensive. Terry and other boys like him deserve the chance for a therapy to stop the disease before it's too late. We CAN save the boy’s lives together!

Donations (0)

  • Anonymous 
    • $50 
    • 6 mos
  • Kaitlin Resides 
    • $20 
    • 8 mos
  • Jean Marc Goguikian 
    • $100 
    • 8 mos
  • Anonymous 
    • $50 
    • 8 mos
  • Sayan Haldar 
    • $50 
    • 9 mos

Organizer 

Rich Horgan 
Organizer
Boston, MA
Terrys Foundation for Muscular Dystrophy 
Registered nonprofit
Donations are 100% tax deductible.
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