Author Archives: June Kinoshita

New documentary tells one family’s story about FSH muscular dystrophy

FSH Society ambassador Lexi Pappas has just completed her first film documentary, based on her family’s multigenerational experience living with facioscapulohumeral muscular dystrophy. We learn how FSHD affects individual members of her family in different ways. The documentary is a powerful, personal “coming out story” about Lexi’s courageous decision to open up about her condition and why it is so important to become an advocate. The film is dedicated to her late grandfather, Edward Norris, a long-time benefactor of the FSH Society. We know he would be so proud. Thank you and kudos, Lexi!

Here is Lexi’s blog post about her documentary.

Team FSHD Cycling’s RAAM has begun!

DONATE TO HELP TEAM FSHD CYCLING’S CROSS ITS FUNDRAISING FINISH LINE!!

We are more proud than we can say to have Team FSHD Cycling embark today on the 3,000-mile Race Across America to raise awareness and funds for our shared mission to beat FSH muscular dystrophy. Thank you to all who raised funds and sent photos to “put a face” on Team FSHD Cycling’s support vehicles. Over the next 7 days, we challenge you to help us get a donation from all 50 states!! View Team FSHD Cycling’s daily location tracker.

And we're off! Track our progress on the Race Across America website. #fshsociety #raam #cycling #fshdcycling

A post shared by Team FSHD Cycling (@fshdcycling) on

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FSH Society Talk Radio – A chat with Chris Carrino, voice of the Brooklyn Nets

Wednesday, May 31, 2017. 10:00 pm EST / 9:00 pm CST.

LISTEN HERE!

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

From our CEO, a call to FSHD researchers

Dear Research Colleagues,

The late Senator Paul Wellstone of Minnesota

As you know, the FSH Society constantly encourages the National Institutes of Health (NIH) to increase the number of grants and the number of dollars it funds on one of the most common forms of muscular dystrophy–facioscapulohumeral muscular dystrophy (FSHD)–while urging the FSHD research community to help the NIH to achieve higher levels of spending on FSHD by submitting grant applications. In fiscal year 2017, the NIH estimates funding $80 million on all forms of muscular dystrophy (source: NIH online Research, Condition, and Disease Categorization (RCDC) system). Continue reading

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.

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

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