by June Kinoshita
During the month of June of this year, the FSHD community will enjoy the thrill of having one of its own lead an eight-person team in the Race Across America (RAAM), a bicycle race from Oceanside, California, to Annapolis, Maryland. The team, recruited by George Pollock, plans to compete in the Open Relay Division. The team expects to complete the race in under seven days and cover more than 450 miles a day.
The team has a personal connection to the disease. Pollock has FSHD. He started to have muscle weakness in his lower right leg while in his late twenties. Ten years later, when he experienced muscle weakness in his left leg, he was finally diagnosed with FSHD. Fortunately for him, the disease is progressing slowly. He was recently elected to the Board of Directors of the FSH Society and has made a commitment to promote awareness to improve diagnosis, support patients, and raise money to fund the Society’s mission. Continue reading
Team FSHD Cycling, formed by George Pollock Jr., will participate in the Open Division as an 8 person team in this year’s Race Across America, one of the most respected and longest running ultra-endurance events in the world. Racers must cycle 3,000 miles across 12 states and climb over 170,000 vertical feet. The 2017 RAAM begins in Oceanside, California, on June 13, and ends approximately 10 days later in Annapolis, Maryland. Team FSHD Cycling is racing to raise awareness of FSH Muscular Dystrophy and has a goal to raise $101,000 for the FSH Society. Visit the Team FSHD Cycling web page for details about the route and team.
Support Team FSHD Cycling through a gift! Continue reading
We just received news that the FSH Society has earned its ninth consecutive 4-star Charity Navigator rating!
We’re now in the top 1% of all U.S. charities! According to Michael Thatcher, President and CEO of Charity Navigator, “Only 1% of the charities we rate have received at least 9 consecutive 4-star evaluations, indicating that FSH Society outperforms most other charities in America. This “Exceptional” designation from Charity Navigator differentiates FSH Society from its peers and demonstrates to the public it is worthy of their trust.” A 4-star Charity Navigator rating is described as “Exceeds industry standards and outperforms most charities in its Cause.” Continue reading
The evening of the CureFSHD Gala on November 11, 2016, in Boston, Massachusetts, was one of those magical moments when we were overcome with gratitude for the generosity, courage, and life-affirming energy of our community. Over 250 patients, families, researchers, doctors, and benefactors had gathered to celebrate the FSH Society’s 25th year. We premiered the short documentary, “Into the Light,” which chronicles the long, arduous journey that has brought us from a world where FSHD and those who live with it were in the dark, to a place illuminated by knowledge and hope. Continue reading
Produced for the FSH Society’s 25th anniversary, our new documentary tells the story of how the Society’s work has led to the discovery of the genetic cause of facioscapulohumeral muscular dystrophy and brought patients out of the darkness into the light. We premiered the film at our CureFSHD gala on November 11.
To all the patients, families and friends who have supported the Society through the years, this is your story. Please share this with others to help them understand what FSHD is, the great progress that has been made, and how their support can lead to a brighter future for tens of thousands of patients.
If you are a Federal employee, you are most likely aware of the Combined Federal Campaign, or CFC. It is the official workplace giving campaign of the Federal government.
Pledges made by Federal civilian, postal, and military donors during the campaign season support eligible nonprofit organizations that provide health and human service benefits throughout the world.
How can you help? If you are a Federal employee or know someone who is, please consider directing your support to the FSH Society when making your pledge to the CFC. Our CFC number is 10239. Continue reading