By Dominique Asher
This year, due to COVID-19, instead of the Race Across America (RAAM), the FSHD society is hosting a National Virtual Walk & Roll to Cure FSHD event on Saturday, September 12, encouraging the 24 chapters spread across the nation and members of the community to walk or ‘roll’ in support of a cure for facioscapulohumeral muscular dystrophy (FSHD).
FishHawk resident George Pollock Jr., Tampa Chapter co-director of the FSHD Society, was diagnosed with FSHD 12 years ago, affecting his lower legs. FSHD is a genetic muscular dystrophy, often affecting the muscles of the face, shoulders or arms.
Though common, FSHD can be extremely difficult to diagnose as it presents itself in different ways in each case and can take several years to diagnose. Over 500,000 people worldwide are affected by FSHD, with no cure available.
Biking more than 3,000 miles on a eight-man relay team, George participated in RAAM in 2017 and 2019, aiming to raise awareness for FSHD and funds towards a possible cure.
RAAM is a cross country bike race spanning from the California Coast all the way to Annapolis, Maryland with solo cyclists or two, four or eight-person teams along with crews relaying and completing the race together.
In 2017, George founded the eight-person Team FSHD alongside his wife, Jane Pollock, Tampa Chapter co-director of the FSHD Society, and recruited cyclists to participate. The team was backed by a 13-member crew stationed along the race.
George said, “Every decade, FSHD gets worse and worse, with over 20 percent affected ending up in a wheelchair.”
For the National Virtual Walk & Roll to Cure FSHD, each FSHD chapter aims to raise around $25,000 in order to fund research and clinical trials for drugs and potential cures as well as to find cheaper ways to diagnose or test for FSHD so that they can become widely available.
The Pollocks and other chapter members are also taking to social media to spread the word about FSHD, using #TampaWalkRoll and #CureFSHD to get the disease trending and raise awareness in the community.
Jane said, “Through advocacy, we hope to build a community to help others around us with FSHD.”
On September 12 at 10 a.m., a livestream of the National Virtual Walk & Roll to Cure FSHD event will be happening on Facebook @FSHDSociety. To learn more or to keep up with the Walk & Roll event, go to www.fshdsociety.org.