Check out this amazing video of Team FSHD Cycling’s epic race this summer. Huge thank you to Emily Pollock for creating this priceless documentary. Warning: Have a box of tissues handy!
Wondering what to do with your used car or truck?
Donating your old vehicle to the FSH Society, is convenient, easy, and may qualify you for a tax deduction. And best of all, your donation of a used car or truck will make a big difference in supporting our mission!
Donate your vehicle today! We have partnered with Vehicles For Charity to process donated vehicles. All you need to do is to complete their SIMPLE ONLINE FORM or call 1-866-628-2277 and they’ll take care of the rest. They will pick up your vehicle, arrange to have your donation towed, and provide you with a tax-deductible receipt, all at no charge to you.
WHEN: At your leisure between 1-31st August 2017
WHY: Michelle couldn’t make it to Michigan this year to see you all, but the fight continues.
Please help her achieve her $50,000 goal! She and Dave will match 100% of all donations! Continue reading
And here they are, our champions! Team FSHD Cycling at the Race Across America finish line in Annapolis last night! We couldn’t be more proud, and humbled, by this incredible feat of planning, grit, athleticism, and heart. The team traversed 3,143.9 miles in eight days, braving blistering desert heat and thunderstorms. On behalf of the entire FSHD community, THANK YOU.
With gratitude to all the companies that generously sponsored Team FSHD Cycling!
Chris is the voice of the NBA’s Brooklyn Nets and as founder of the Chris Carrino Foundation, an outspoken advocate for FSH muscular dystrophy. We will hear his story—how he embarked on his career as a sports broadcaster, keys to success in such a high-pressure job, observations about the game—as well as his FSHD journey. How did he learn he has FSHD, and why did he choose to keep his diagnosis secret until recently? How does he manage the intense travel and demands of his job? Why did he create the foundation in 2011, and what is its mission? What’s next for Chris? Post your questions in the comments section and we’ll ask him during the show! Or you can call in and talk to him live on the air. Continue reading
Board member George Pollock, who is racing across America this June to raise awareness and funds for FSHD, was featured in his high school’s magazine. In the article, George discusses what gave him the idea to participate in the race, what keeps him up at night worrying, and what he hopes to come out of the race. Read it here.
Source: Perspectives Spring 2017.
“In this life-changing storm, it feels good to have someone like you reach out to us so quickly and competently.” – Alex and AC Hoffmann, parents
When my mother, Carol, was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) in the late 1950s, she was told she had only five years to live. As appalling as we find this today, knowing that most people with FSHD will live a normal lifespan, back then most physicians knew next to nothing about the condition.
Five years passed, and Carol noticed she was still very much alive. Years later, when the FSH Society was founded, it became part of our mission to make sure no patient ever goes through a similar experience. At the FSH Society, we researched facts about FSHD and provided accurate information, validated by our own experience as patients. For years, Carol was the voice on the phone for all who sought help and comfort. My mother passed away in 2012, but her spirit lives on in the Society’s mission to inform and empower all of us with FSHD. Continue reading
World FSHD Day is right around the corner and we know you want to be ready to raise awareness. The Society’s World FSHD Day t-shirts are here in the official color: orange. Get into the spirit of World FSHD Day however you can! Get creative! Paint your nails orange, put up orange lights near your house, participate in our orange slice selfie campaign, use orange chalk to draw the World FSHD Day logo on your driveway! Dress up your friends in the official t-shirt and do a flash mob at the mall! The possibilities are endless. Share whatever you do to mark the day with us on our Facebook page, Twitter, and Instagram, using #WorldFSHDday. Unite with FSH Society members all over the world as we raise awareness about Facioscapulohumeral Muscular Dystrophy. Buy your t-shirt here!
#Whistle4FSH has one goal—to find treatments for FSHD, the most prevalent type of muscular dystrophy, caused by a genetic mutation on chromosome 4. People with FSHD can not only lose the ability to walk, do simple tasks, or blink, but also be robbed of the ability to whistle or smile. WHISTLE FOR THOSE WHO CANNOT WHISTLE THEMSELVES. We know you want to make a treatment a reality too—so #Whistle4FSH by:
- RECORD: Take a video of yourself or group whistling a few refrains from your favorite song to increase public awareness of FSHD;
- UPLOAD: Upload your video to social media, tagging at least four (4) family/ friends to engage and grow the message (#Whistle4FSH);
- GIVE: Make a Donation to support Susan Barclay’s 50th Birthday Research Fundraiser;
- IT’S EASY – wet your whistle. video. post. tag. #Whistle4FSH
As Susan reflected on the next major milestone in her life, turning 50, her friend challenged her to “think of something you have always been afraid of doing and do it…just something crazy.” Continue reading
FSH Society member Mia Archuleta is asking you to help our community raise awareness and funds by reaching out to your network. Studies show that asking friends and family to donate will multiply your own donations by seven-fold!! Please read on to learn about our team fundraising campaign! NEW: Read this great article about George Pollock – 2017 Race Across America. It is truly inspiring and worth sharing.
To mark this year’s World FSHD Day, on June 20th, I am asking you to help raise global visibility and support for the FSH Society.
George Pollock and Team FSHD Cycling are offering an amazing opportunity to raise awareness. As Team FSHD Cycling races 3,000 miles across the continent in the Race Across America this June 17-24th, the live video stream will get millions of hits. We want the world to see the people who they are racing for, the men, women, and children who live with FSHD.
To that end, I am reaching out to you to challenge your family, friends, and associates to help raise much-needed dollars in honor of someone you care about. Your honoree’s photo will be displayed on the side of a Team FSHD Cycling support van as it drives across America, helping to raise awareness in the most personal way about why this cause matters. The more you raise, the larger the photo! This is a once-in-a-lifetime opportunity!
This toolkit includes everything you need to get started and to help you reach your goal. The FSH Society is a 501(c)(3) nonprofit tax-exempt organization. Donations made to the FSH Society are tax-deductible.
DEADLINE TO GET YOUR PHOTO & DONATIONS IN IS JUNE 7!!
Thank you for your kind consideration of this appeal.
Download the Team Fundraising Toolkit and get going! It includes:
- A sample letter to friends and family & FSHD Fact Sheet
- Sample social media posts & logos to use on social media
- Sample fundraising tracker
Note: Team FSHD Cycling is holding its 2017 Race Across America Campaign as independent volunteers, not as employees, agents, Board members, advisors, or volunteers of the FSH Society. Likewise, I am making this appeal as an independent volunteer.