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Saving my brother from Duchenne muscular dystrophy

$9,595 of $100,000 goal

Raised by 18 people in 16 months


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. 

_______________________________________

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. 
_______________________________________

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!
+ Read More
Excited to share that Harvard Business School recently released a podcast interview on our foundation's work to develop precision medicine and its potential to save the lives of thousands suffering from Duchenne MD & other genetic diseases!

Listen to the podcast here: https://www.alumni.hbs.edu/stories/Pages/story-bulletin.aspx?num=6897
+ Read More
Good news! Our first phase of the project is nearing completion. Our collaborators at Yale have prepared the first construct and will begin testing it on Terry's cell line this month. Fingers crossed for this major milestone.
+ Read More
Join me in supporting Terry's Foundation for Muscular Dystrophy - to help accelerate life-saving treatment for Duchenne muscular dystrophy.
Terry & I at Boston Children's Hospital
+ Read More
Read a Previous Update

$9,595 of $100,000 goal

Raised by 18 people in 16 months
Funds raised will benefit:
Terrys Foundation for Muscular Dystrophy
Certified Charity
+ Learn More
Boston, MA
EIN: 822473513
How it Works
  1. You make a donation using a PayPal account or a credit/debit card to PayPal Giving Fund (a 501(c)(3) charitable organization).
  2. After the deduction of payment processing fees, PayPal Giving Fund delivers the funds it receives to the chosen charity on a monthly basis.*
* If, after reasonable efforts, PayPal Giving Fund cannot deliver donations to this charity, the funds may be donated to another charity per PayPal Giving Fund’s policies.
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