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.
Your donations are vital for helping the FSH Society overcome its challenges and meet its goals. We must invest in deciphering FSH muscular dystrophy so that we can aim treatments at the correct targets, even as we build the infrastructure to ensure that clinical trials will have meaningful results. A group of generous benefactors has pledged to match your donations up to a total of $50,000 during our spring campaign. Help us rise to this fundraising challenge and make a gift now.
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. You can make a donation in honor of Team FSHD Cycling here!
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
Our eye-catching T-Shirts, totes and mugs feature the Bach 2 Bowie logo from the Ghostly Gala, our annual Los Angeles-based event to raise awareness and funds to fight FSH muscular dystrophy, one of the most common hereditary muscle-weakening diseases. Just as music unites us, so does our care and concern for the health and well being of individuals and families affected by FSHD. Net proceeds support the FSH Society.
Deadline March 30. A minimum of 25 orders must be placed to trigger production. Your credit card will not be charged until then.
Order your Bach 2 Bowie items here.
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. Be inspired by this great article about George Pollock and 2017 Race Across America.
Support Team FSHD Cycling through a gift! Or learn more about how you can mobilize your friends and family to support Team FSHD Cycling and the FSH Society with our Team fundraising toolkit Continue reading