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Why I Ride to End Duchenne

July 27, 2019

 

When I met Gabe he was 8 years old. He could swing a bat, hit a ball, and run around the bases. Today Gabe is 14 years old and he will tell you that Duchenne impacts his muscles, keeping him from being able to play baseball, basketball, or football – much less walk.

 

As co-founder of the trans-America Ride4Gabe trek, myself and two other cyclist are about to ride from Birmingham to Pikes Peak summit in Colorado. Our mission is to raise awareness about Gabe and Duchenne. And our goal is to enable the Hope for Gabe Foundation to keep fighting to end Duchenne Muscular Dystrophy (DMD).

Why do I ride to end Duchenne?

 

I was fortunate to be the chief of staff to Gabe’s congressman, Spencer Bachus, when Gabe and his parents came to D.C. to educate the congressman about Duchenne. On a daily basis in this role, I met many people with needs deserving of my full attention. Yet something about Gabe’s story really got to my heart.

 

At first I began calling his dad, Scott, at home each week. We'd talk about Gabe, as I simply wanted to check in on him and his whole family. Soon our phone calls were a nightly routine. Then, a few months later, I had an idea: I wanted to raise awareness for Duchenne by organizing a cross-country bicycle "ride for Gabe." Seventy-seven days later, Wes Bates and I were pedaling from Oregon to Alabama in the very first Ride4Gabe (R4G).

Five years later, we've successfully completed Ride4Gabe 2.0 (2016) and Ride4Gabe III (2017). Along the way we added cross-country cyclist Payne Griffin and Brian Toone, respectively. This year Team R4G has added cyclist Demetrious White. After we complete Ride4Gabe IV next week, we will have pedaled across 32 states for the cause of defeating Duchenne.

 

Together, with all our supporters, we have made a real impact.

 

In 2015, Ride4Gabe rode into Montgomery with Gabe where he asked state lawmakers to pass a "Right to Try" law. They responded and did so, naming the law after him. Gabe’s family has always had an insurance policy that will pay for treatments that have passed FDA safety tests yet not fully approved. Using the Gabe Griffin Right to Try law in Alabama, or its more recently passed federal counterpart, we hope to gain access to some promising new gene therapy treatments currently snailing their way through the FDA approval process

 

In 2016, Gabe and Team R4G went across the country lending help to congressional leaders as they rallied in bipartisan fashion to pass a new federal law called the 21st Century Cures Act. The law was intended to make rare disease drugs available faster. Gabe also rallied in Montgomery with other rare disease advocates to make Alabama one of just a few states with a rare disease advisory council. The Alabama Rare Disease Advisory Council is now organized and beginning work to inform state government leaders about the challenges and needs of the rare disease community in Alabama.

 

Also in 2016, the first drug for Duchenne was approved by the FDA. While that specific drug won’t help Gabe—due to his specific genetic mutation—the approval undeniably helped increase Duchenne awareness, which led to more private and public investment in Duchenne research.

 

 

 

What can you do to help Gabe today?

 

Riding to raise awareness and ending Duchenne is an uphill battle. Today we need your support, encouragement, and prayers. And donations.

 

Please consider giving $15 a mile to help the Hope for Gabe Foundation continue fighting to beat Duchenne. BONUS: Your donation to the Hope for Gabe Foundation is tax-deductible. (Please consult a financial advisor for specific details.) 

 

Please follow us on our journey to Colorado. We will be live-streaming Ride4Gabe IV on Facebook. Your comments or questions across our social media posts will keep us charged. Thank you!

Let's ride, Michael 

DONATE
GoFundMe: https://www.gofundme.com/f/ride4gabe-iv

Facebook Fundraiser (*no fees): https://www.facebook.com/fund/HopeforGabe/ 
 

FOLLOW
Facebook: www.facebook.com/ride4gabe 
Instagram: www.instagram.com/ride4gabe 
Our Route – www.ride4gabe.com

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