Who’s “cute, red-headed, and freckle faced?” It’s Gabe! The 11-year-old has been following three cyclists in their 2,200 mile bike ride from Maine to Alabama, and Gabe’s star power is rising. On Day 5 of the 9-day ride, Gabe’s team pedaled through Buffalo, NY. There to greet them were local Duchenne families and officials from Women & Children’s Hospital of Buffalo.
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Gabe’s unbeatable spirit is contagious and folks have taken note. From becoming a key advocate on the #Path2Cures with Members of Congress to scoring some major points in the arena, there’s no stopping Gabe.
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COLUMN: Boy from Alabama is face of ‘Cures Act’
By David Sherman
… Imagine you have an 11-year-old son who is afflicted with the most common fatal genetic disorder diagnosed in childhood, Duchenne Muscular Dystrophy.
Gabe Griffin of Birmingham, Alabama, is described as “cute, red-headed, and freckle faced.” He is the namesake of a tax-exempt non-profit organization – the Hope for Gabe Foundation.
Earlier this week, participants in the Ride4Gabe rolled through Western New York as part of a 455-mile route through the Empire State as part of a 2,200-mile cross-country bicycling event to raise funds and awareness for Duchenne Muscular Dystrophy. Three cyclists will attempt to pedal 200 miles per day for 11 consecutive days from Houlton, Maine, to Mobile, Alabama.
The entourage visited Women & Children’s Hospital of Buffalo on Tuesday to meet Duchenne families, physicians and hospital leadership. …
“We work with people from all over the country to educate the public and members of Congress about Duchenne and related drug approval policies at the FDA,” said lead organizer and cyclist Michael Staley. “Our message translates across the rare disease community and is especially relevant to patients and families with hope invested in precision medicine initiatives.” …
Undaunted, Gabe and his parents have been encouraged by the 21st Century Cures Act and recently made the trip from Alabama to Washington to meet with Energy and Commerce Committee Chairman Fred Upton (R-MI). The 21st Century Cures Act passed the House and is being taken up by the Senate. …
“To date, nobody has survived Duchenne,” said Scott Griffin. “We lose children as young as 9 or 10 due to heart and lung failure. It is uncommon for a 14-year-old Duchenne patient to still walk and very rare for them to live past 25. Thankfully, many researchers believe we can turn around the muscle wasting caused by Duchenne within a decade.” …
Hopefully when the Senate returns from its summer hiatus, it can demonstrate support for boys like Gabe. Time is of the essence. …
Upton may have said it best. “We are committed, the Senate is committed, and the administration is committed – 2016 is the year for Cures.”
Good luck, Gabe.
To read the full column online, click HERE.
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