H4G Ride4Gabe NEWS

BIRMINGHAM, ALABAMA - On Wednesday July 30, the Food and Drug Administration officially responded to a petition demanding accelerated approval for safe, effective therapies for children with Duchenne.

Janet Woodcock, Director, FDA Center for Drug Evaluation and Research, noted that the agency currently has no approved therapies for this serious and life-threatening disease. She added that the FDA is willing to explore all potential pathways, included accelerated approval, as appropriate.

Woodcock's statement came in response to the gathering of more than 106,000 signatures. Posted to The White House "We the People" petition web site, Woodcock spoke on behalf of The White House saying her agency is "actively engaged with a number of drug companies focused on developing new drugs for Duchenne muscular dystrophy."

Alabama-based Hope for Gabe Foundation was a part of the campaign to collect petition signatures. Scott and Traci Griffin's 9-year-old son, Gabe, suffers from Duchenne. After four months of waiting for an official response, the news came as a sign of hope for the Griffins.

Duchenne muscular dystrophy is universally fatal, the number one genetic killer of children and affects 1 in 3,500 males at birth. Today there are 24,000 boys in the United States with Duchenne, and over 350,000 children worldwide.

Scott Griffin said, "The Duchenne community is celebrating, and the FDA's acknowledgment is finally on the record. Our urgent pleas for access to drugs that could help Gabe and other terminally ill patients cannot be ignored. We hope and pray every day that Gabe's generation will be the first children to survive this awful disease."

On June 29 in Oregon, the Griffins launched Ride4Gabe, a cross-country bike trek. The goal of the ride is to create further awareness of Duchenne and to raise money that further funds known and proven research. The trek has now crossed seven states over 2,400 miles. On Friday August 8, the cyclists will be in Birmingham. Gabe Griffin will make an appearance at the Barons game, throwing out the first pitch verses the Huntsville Stars. Gabe will be joined by his family and the Ride4Gabe crew. A finale celebration is also planned in Mobile on August 14.

The Ride4Gabe web site chronicles the entire trek, including live daily updates, location photos, videos and overnight blog entries. Visitors can also follow the cyclists' real-time statistical data via Garmin's LiveTrack software. Donations to the 501(c)3 foundation, Hope for Gabe, can directly be made on the site. The Ride4Gabe trans-America trek can also be found on Facebook and Twitter.

For more info or R4G interview requests, contact Press Director Luke Chandler at (423) 326-5406

# # #

Hope for Gabe's Pre-Ride Press Releases

For Immediate Release:

Tuesday, May 13 2014

Contact: Scott Griffin

(205) 542-1069

SHELBY COUNTY PARENTS GIVE THEIR SON THE GIFT OF A LIFETIME

BIRMINGHAM, ALABAMA – Gabe Griffin of Shelby County is turning 9 years old today, and his parents are giving him the gift of a lifetime. Two cyclists will be taking Gabe’s message of hope across America in July and August with the goal of raising awareness and money to fund research to cure Gabe’s rare disorder.

Scott and Traci Griffin’s twin son suffers from a genetic mutation called Duchenne Muscular Dystrophy. Duchenne Muscular Dystrophy (DMD) is caused by an absence of dystrophin, a protein that helps keep the muscles intact. The onset of this fatal disorder occurs during early childhood and causes generalized weakness and muscle wasting that increases over time. While medical advances have led to some very promising clinical trials, to date there is no cure and no one has survived.

Scott said, “At 9 years old, Gabe walks, hugs, breathes, and feeds himself like any other typical child that age, but that will be taken away in the next few years if we don’t find a cure. Without a cure, Gabe is expected by doctors to be in a wheelchair by the time he is 10 to 12 years old and lose his life around the age of 20. A promising drug has slowed the progression of this disorder for 12 children who have been on it for 156 weeks and counting. Unfortunately, the Food and Drug Administration has not used their authority to grant access to the many other children like Gabe who suffer from Duchenne. Traci and I are willing to accept all risks to save our son and we will do anything to keep from having to put our son in a wheelchair in a couple of years.”

The Griffin’s run a foundation called Hope for Gabe (H4G), and the bicycle ride is being called Ride4Gabe. Michael Staley, an Alabama resident who lives in Washington, D.C., and Indiana University student Wes Bates of Aurora, Colorado, will begin cycling from Astoria, Oregon on June 28. They will cross the country, averaging about 75 miles a day, and eventually cross Alabama from north to south, completing Ride4Gabe in Mobile by mid-August. Both riders say they are passionate about educating the public about this muscle-killing disorder that affects one in 3,500 young boys.

Michael Staley said, “At the age when a little boy begins to fully develop into a man with strong muscles, Gabe is going to be experiencing the opposite. Wes and I feel led to educate people about this disorder and we believe that Duchenne can be stopped and Gabe’s life can be saved. We are asking community leaders and cyclists in each city and state along our route to get involved.”

The volunteer cyclists and their small support team are working to educate people across America about DMD, and the funds they raise will be used to advance current research. To ensure the majority of the money goes to research, the foundation is requesting donations of a motorhome and SUV for the ride, camping gear, cycling gear, food, and assistive technology to guide and safeguard the cyclists.

Scott Griffin said, “Traci and I live every day trying to help ‘fix’ Gabe’s problem. Our community has rallied around our efforts, and we are ready to take our message across America through Ride4Gabe.”

Ride4Gabe planning is nearly complete and the foundation website will be updated soon with specific details about the ride. You can follow the ride on Facebook (Hope for Gabe) and Twitter (@hopeforgabe).

To get involved or make a donation, visit www.hopeforgabe.org or call Scott Griffin at (205) 542-1069.

# # #

For Immediate Release:

Friday, May 30, 2014

Contact: Wes Bates

(720) 234-3927

AURORA COLLEGE STUDENT CYCLING ACROSS AMERICA FOR RARE DISORDER

TAKING COLORADO’S ‘RIGHT TO TRY’ MESSAGE WITH HIM

AURORA, COLORADO – Gabe Griffin of Shelby County, Alabama turned 9 years old recently, and his parents gave him the gift of a lifetime. Gabe has a rare form of Muscular Dystrophy, called Duchenne, that primarily impacts young boys and is usually fatal around the age of twenty. Two cyclists will be taking Gabe’s message of hope across America in July and August. Wes Bates, of Aurora, is one of those cyclists. Wes will be working to educate people about Colorado’s recently enacted ‘right to try’ law, which allows doctors and patients to work together to access safe drugs that the FDA has not approved for use by terminally ill patients.

Bates said, “Nobody has more hope invested in institutional medical research than families of patients whose lives could be saved by breakthrough medications. Governor Hickenlooper approved the ‘right to try’ law on May 17, and this should be a source of encouragement to families of terminally ill patients across America.”

Scott and Traci Griffin’s twin son, Gabe, suffers from a genetic mutation called Duchenne Muscular Dystrophy (DMD). Duchenne is caused by an absence of dystrophin, a protein that helps keep the muscles intact. The onset of this fatal disorder occurs during early childhood and causes generalized weakness and muscle wasting that increases over time. While medical advances have led to some very promising clinical trials, to date there is no cure and no one has survived.

Scott said, “At 9 years old, Gabe walks, hugs, breathes, and feeds himself like any other typical child that age, but that will be taken away in the next few years if we don’t find a cure. Without a cure, Gabe is expected by doctors to be in a wheelchair by the time he is 10 to 12 years old and lose his life around the age of 20. A promising drug has slowed the progression of this disorder for 12 children who have been on it for 156 weeks and counting. Unfortunately, the Food and Drug Administration has not used their authority to grant access to the many other children like Gabe who suffer from Duchenne. Traci and I are willing to accept all risks to save our son and we will do anything to keep from having to put our son in a wheelchair in a couple of years.”

The Griffin’s run a foundation called Hope for Gabe (H4G), and the bicycle ride is being called Ride4Gabe. The next month will be filled with heavy training for Bates and his cycling partner, Michael Staley, who is an Alabama resident. Both riders say they are passionate about educating the public about this muscle-killing disorder that affects one in 3,500 young boys.

Bates said, “We hope that people will hear this story and donate to our cause. We know our legs are going to get tired out there, but thinking about what Gabe is going through will be our source of inspiration as we pedal 3,300 miles across America.”

Bates, a 2013 Cherokee Trail High School graduate, and Staley will begin cycling from Astoria, Oregon on June 28. They will ride east through Oregon, Idaho, Wyoming, Nebraska, South Dakota, and across Iowa as part of RAGBRAI in late July. The ride will then take them south, through Illinois, Indiana, Kentucky, Tennessee, and Alabama. Ride4Gabe will end in Mobile, Alabama by mid-August.

Michael Staley said, “At the age when a little boy begins to fully develop into a man with strong muscles, Gabe is going to be experiencing the opposite. Wes and I feel led to educate people about this disorder and we believe that Duchenne can be stopped and Gabe’s life can be saved. We are asking community leaders and cyclists in each city and state along our route to get involved.”

The volunteer cyclists and their small support team are working to educate people across America about DMD, and the proceeds of Ride4Gabe will be used to advance current research.

Scott Griffin said, “Traci and I live every day trying to help ‘fix’ Gabe’s problem. Our community has rallied around our efforts, and we are ready to take our message across America through Ride4Gabe.”

Ride4Gabe planning is nearly complete and the foundation website will be updated soon with specific details about the ride. You can follow the ride on Facebook (Hope for Gabe) and Twitter (@hopeforgabe).

To get involved or make a donation, visit www.hopeforgabe.org or call Wes Bates at (720) 234-3927.

# # #

2014 RIDE4GABE IN THE NEWS

Videos

Home

Press Releases

We The People Petition

Response to The White House

Ride4Gabe On the Air

AUG 5: Michael Staley on the Matt Murphy Show (WAPI)

AUG 4: Scott Griffin on the Bobby Bones Show

JUL16: Michael Staley on the Simon Conway Show

JUN 27: Scott Griffin on the Lars Larson Show

Ride4Gabe Press Coverage

WEEK 8 :: ALABAMA

WEEK 7 :: ALABAMA

Hope for Gabe's Response to The White House

Hope for Gabe's Pre-Ride Press Releases

2014 RIDE4GABE IN THE NEWS