The Moving Story of George Pollock’s quest to Race Across America

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.

2017 Donor Impact Report is here!

“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 T-shirts are here!

World FSHD Day is right around the corner and we know you want to be ready to raiseWorld FSHD Day t-shirt 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!

 

Susan Barclay’s 50th Birthday Challenge #Whistle4FSH

#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:

  1. RECORD: Take a video of yourself or group whistling a few refrains from your favorite song to increase public awareness of FSHD;
  2. UPLOAD: Upload your video to social media, tagging at least four (4) family/ friends to engage and grow the message  (#Whistle4FSH);
  3. GIVE: Make a Donation to support Susan Barclay’s 50th Birthday Research Fundraiser;
  4. IT’S EASY – wet your whistle. video. post. tag. #Whistle4FSH

The Story
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

Team Fundraising for World FSHD Day

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.

Dear Friends,

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.

Sincerely,
Mia Archuleta
Arlington, Texas

Download the Team Fundraising Toolkit and get going! It includes:

  • Instructions
  • 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.

Picture of Trisha Sprayberry

My Boston Adventure: traveling solo with my wheelchair

Written by Trisha Lynn Sprayberry
Las Vegas, Nevada

My adventure began late Wednesday night, November 9, 2016. My fiancé, Erin, had dropped me off at the airport. With my suitcase in hand and a kiss to send me on my way, I was headed to Boston on a red-eye flight. I was attending my first patient conference, hosted by the FSH Society, and their inaugural #CureFSHD gala. It was at the grand Westin Copley Place Hotel in Boston, Massachusetts.

Continue reading

Spring $50K matching gift challenge!

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.

If your company matches donations, you could quadruple your impact!  Continue reading

Into the Light Wins Three Awards at Best Shorts Film Competition

The FSH Society is proud and honored to have been recognized for 3 awards from the 6th Annual Best Shorts Film Competition for our short film documentary, Into the Light. Honors were presented to Directors Jonathan Williams and Paula Aguilera, and included:

  • Award of Merit: Disability Issues
  • Award of Recognition: Documentary Short
  • Award of Merit: Public Service Programming / PSA

Into the Light features the powerful story of high-school senior Sarah Geissler, who is living with FSHD, and her experience with FSH muscular dystrophy, a rare genetic muscle-weakening disease that affects an estimated 1 in 8,000 people. Along with Geissler’s personal journey, the film chronicles the rise of the FSH Society and its successful efforts to fund research leading to the discovery of FSHD’s genetic cause. In creating this documentary, it was our hope to share the empowering stories of patients who have taken matters into their own hands to seek a better future for themselves and for fellow patients.

The Best Shorts Competition is an international film competition striving to create opportunities for filmmakers of all levels to gain recognition. Each year, thousands of entries are judged and scored by highly qualified film and TV industry professionals, with select winners having gone on to win Emmys and Oscars. Our entry was, no doubt, amongst a variety of those by talented filmmakers and we’re so pleased to be chosen and hope to raise awareness of FSHD with this recognition.

Accessibility hacks, mobility aids, and tips (Part 2 of 3)

Written by Paul Shay
Groton, Massachusetts

Grab Bars. In conjunction with my half-steps, we added a conventional grab bar in the doorway to our garage. My wife came up with the idea of using a six-inch, black wrought iron drawer pull in the doorway in our house that contains the step from the entry area to the main level. It works very well, and it looks much less obtrusive and “institutional” than a standard grab bar.

For our shower, we purchased a couple of 12-inch suction cup-mount grab bars and installed them on the walls. They are intended only for assisting in stepping into and out of the shower, and for help with balance―they can’t bear your full body weight. The best thing about them is their portability, thanks to the suction cup-mounting system. They fit handily into a suitcase and make it possible to use hotel rooms that lack installed mobility aids in conjunction with:

Folding Toilet Frame. Essentially a portable set of armchair-like padded rails, this has proven to be one of our best purchases. It is fully height adjustable and fits behind the seat of any commode without mounting hardware. We have been able to toss it in the trunk and take off on trips without having to make an ADA-compliant room reservation.

Stairlift. By far our largest purchase to date has been the installation of a stairlift in our home. With our master bedroom and my office on the second floor, access was becoming a serious issue. We were able to buy a gently used unit with a factory warranty directly from Stannah for $4,300 (including the use of an Angie’s List coupon). While that is not an insubstantial amount, it beat having to move! The unit has a battery backup feature in case of a power failure, and remote controls that allow the chair to tote bulky/heavy objects up and down the stairs

FSH Society grant award for myostatin study

Belgian Blue cattle are ripped, thanks to a mutation in their myostatin gene. Photo credit: https://commons.wikimedia.org/w/index.php?curid=1702186

In April, the FSH Society awarded Julie Dumonceaux PhD, or University College London, Institute of Child Health. a grant of $9,659.43 for one year for a project aimed at better understanding patients’ response to a class of drugs called myostatin inhibitors.

These drugs, such as Acceleron’s ACE-083 which is currently in a clinical trial in FSH muscular dystrophy patients, target myostatin, a molecule that the body produces naturally to inhibit muscle growth. The rationale for blocking myostatin is to enable muscle to achieve greater mass than it otherwise would. In conditions such as FSHD, where muscle mass is lost, a myostatin inhibitor would in theory enable muscle to re-grow without having to fight an uphill battle against the growth-blocking effects of myostatin. Continue reading