Governor Bentley Raises Awareness for Rare Disease Advocacy Day


By: Daniel Sparkman, Press Secretary & Director of Digital Media

MONTGOMERY (Governor’s Office) — Governor Robert Bentley is honored to continue to lend his support to raising awareness of rare diseases, by welcoming a group of cyclists riding in support of the creation of a Rare Disease Advisory Council in Alabama.

The cyclists started pedaling from Cahaba Cycles in Pelham at 3 a.m. Tuesday and concluded their ride at the State Capitol. They met with rare disease advocates to discuss how the Rare Disease Advisory Council can aid economic development efforts in addition to the benefits of greater collaboration among those affected by rare diseases.

“It is an honor to help raise awareness to diseases that affect nearly 30 million Americans,” Governor Bentley said. “There are almost 7,000 rare diseases which have serious and debilitating conditions and a significant impact on the lives of those affected. I hope that our efforts will help increase the research into these diseases and will one day lead to cures.”

State Representative April Weaver, chair of the House Health Committee, introduced a resolution on February 27th to create a Rare Disease Advisory Council in Alabama. She hopes to make Alabama one of a handful of states with a group dedicated to helping state leaders better understand and address the needs of rare disease communities.

“It is estimated that 10% of Alabama citizens are directly impacted by rare disease,” Representative Weaver said. “The goal of the Rare Disease Advisory Council is to bring everyone together to complement efforts already underway and spur new collaborations that will lead to more cures in the future.”

The resolution would house the Advisory Council within the School of Medicine of the University of Alabama at Birmingham and charges the Advisory Council with advising the Governor and the Legislature on research, diagnosis, treatment, and education relating to rare diseases.

Birmingham-based Hope for Gabe Foundation, founded by Scott Griffin whose son was diagnosed with a rare and devastating form of Muscular Dystrophy called Duchenne, organized the ride in the same style as their annual Ride4Gabe.

Photo Gallery:
03-14-17 Rare Disease Ride Arrives at state Capitol