Luncheon highlights work on behalf of rare disease patients

By JENNIFER COHRON
Posted 8/30/18

Michael Staley met hundreds of constituents while serving as U.S. Rep. Spencer Bachus' chief of staff from 2007 to 2014. Only one changed his life.Staley shared the story of how he became an advocate …

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Luncheon highlights work on behalf of rare disease patients

Posted

Michael Staley met hundreds of constituents while serving as U.S. Rep. Spencer Bachus' chief of staff from 2007 to 2014. Only one changed his life.

Staley shared the story of how he became an advocate for patients with rare diseases at the Walker Area Community Foundation's annual luncheon on Wednesday at the Jasper Civic Center. 

Staley met Gabe Griffin of Chelsea and his family in February 2013. Gabe, now 13, was diagnosed with Duchenne Muscular Dystrophy in 2008. 

After a tour of Bachus' D.C. office, Gabe's father, Scott, told Staley that he needed help to save his son.

Duchenne is the most common and severe form of muscular dystrophy that affects 15,000 boys in the United States. Most patients do not survive past their 20s.

"A young Duchenne patient is usually diagnosed around the age of 3. They need an electric scooter sometime around middle school. They're wheelchair-bound in their early teenage years and bedridden by the time they turn 20," Staley said.

Scott Griffin asked for Staley's help getting approval from the Federal Drug Administration (FDA) for a drug treatment that had been shown to delay the progression of the disease while being tested in clinical trials for three years.

Though the drug would not help Gabe, its approval would pave the way for follow-up treatments that might.

In 2014, Staley took a leave of absence from work and participated in the Ride4Gabe, a 3,400-mile, 42-day bicycle ride from Oregon to Mobile. 

"We met amazing people. Sadly, some of the Duchenne patients that we met that year have passed away," Staley said.

In 2015, Alabama legislators passed the Gabe Griffin Right to Try Act, which gives terminally ill patients access to medicines that have not received final FDA approval.

A second Ride4Gabe was held in 2016. That ride covered 2,200 miles in 11 days. One of the cyclists who participated was Jasper's First United Methodist Church Pastor Alan Beasley.

The purpose of the ride was to raise awareness of the 21st Century Cures Act, which was designed to help accelerate medical product development and bring new innovations and advances to patients who need them faster and more efficiently. It was signed into law in December 2016.

The FDA also approved the first drug for Duchenne in 2016.

In 2017, Alabama became the fourth state to establish a Rare Disease Advisory Council. 

Today, Gabe is a middle school student who moves around on a scooter, though he was recently fitted for an electric wheelchair. 

"We don't know exactly how this is all going to turn out for Gabe, but we do know that one kid named Gabe is making a huge impact," Staley said.

In 2016, Staley launched Chain Link Solutions, which supports clients through lobbying, government affairs and advocacy efforts.

The luncheon concluded with a video that highlighted several of the people and projects that the Community Foundation has supported. The projects included Hope House's food truck, the Walker County Health Action Partnership, Jasper Main Street and rebuilding efforts in Curry following tornadoes in 2002 and in Cordova following the 2011 tornadoes.

Since its founding in 1995, the Foundation (wacf.org) has distributed $18 million in grants to nonprofits that serve Walker County. A total of nearly $1.4 million in grants were distributed in 2017. The Foundation has $26.8 million in net assets.