Author Archives: Chel Wolverton

FSH Society Awards $541,133 in Funding for FSH Muscular Dystrophy Research

Boston-based Non-profit Awards New Grants to Facilitate Search for a Cure

BOSTON – April 5, 2017 – Today the FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced it has committed $541,133 in funding to five research projects that aim to break new ground in the search for a treatment and cure for FSHD. These grants follow the Society’s record breaking $1.36 million awarded in total research funding in 2016.

“These grants are a testament to the dedication of researchers within the FSHD community committed to understanding and solving how FSHD works through high quality peer-reviewed research” said Daniel Perez, President and CEO of the FSH Society. “With these grants we look to build upon our record-breaking success in 2016, which would not have been possible without the generosity and sustained support of donors, Society management and staff, our Board members and volunteers.”

The following proposals submitted in August 2016 were approved: Continue reading

FSH Society Supporters Dr. Michael Kyba and Marge Brchan Share Their Story With FOX 9 Minneapolis

Over the weekend, supporters of the FSH Society Dr. Michael Kyba of the University of Minnesota and patient Marge Brchan shared their amazing story with Leah Beno of FOX 9 Minneapolis.

To watch the broadcast video clip, click here.

After being diagnosed at 19 years old, Brchan has battled the effects of FSHD most of her life. “It was very hopeless,” said Brchan. “They knew very little about the disease. There wasn’t anyone focusing on the disease. Basically, each year you find you lose more and more ability to lift, to walk.” Continue reading

Consensus Reached to Move Forward with Formation of International Global FSHD Patient Registry

Newly Formed Facioscapulohumeral Muscular Dystrophy Consortium Aims to Consolidate More than 13 Patient Registries in Effort to Accelerate Research on Rare Disease

BOSTON – (February 22, 2017) – Today the FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced that with the FSHD Champions, an international alliance of FSHD patient advocacy organizations, a consensus has been reached to move forward with the vision of an international global FSHD patient registry. The goals of the registry will be to accelerate research to understand and treat FSHD, and empower patients to gain insights from the data about their condition and improve their health and quality of life. Continue reading

Thank you, Spencer and Carden!

This week, Spencer Wyckoff competed on NBC’s “American Ninja Warrior” to raise awareness and funds for the FSH Society. Before taking the course, Spencer and his sister, Carden, described their family’s experience with FSHD. If you missed it, watch a recap of their inspirational story here.

Carden created this video to thank their supporters and to encourage everyone to take part in World FSHD Day on June 20, 2016.

Thank you, Spencer and Carden, for letting us be a part of your journey and for bringing FSHD awareness to millions of Americans!

The Truth Hurts, but I Can Bear It

The following essay was written by Zabrisa, a 16 year old FSHD patient who lives in Arizona.

Zabrisa

Zabrisa Zelinksi – FSHD Patient

“Are you strong enough? Are you really sure you can do this, you’re not too weak?” “You’re such an inspiration for chasing your dreams.” “Smile, Zabrisa!” “You look so weird.” “Your ears–what are those things in your ears?” “Can you hear me now?” “So Zabrisa, your future?”

I’ve gone through an awful lot for the 16 years that I’ve been alive. Diagnosed with an uncommon muscle disease at 1 ½ years old, I had challenges and difficulties served to me on silver platters. I never liked thinking of myself as “disabled” nor did I ever think anything was wrong with me. I was just a person who happened to have a muscle disease. I didn’t let myself think about it; how different I was from the rest of them, how I’d always have to work a little harder to get where I’m going in life. I listened to the doctors rattle off facts about atrophy and degeneration of muscle tissue and scapular fusion surgery but never paid it much heed. I’d deal with it when I got there. Well now I’m getting there and it’s scary. Continue reading

FSH Society’s International Meeting to Bring Together Patients & Researchers From Around the World to Explore New Insights on Rare Disease

The FSH Society, the Massachusetts-based charitable foundation that has transformed the science of a little-known disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Biennial International Network Meeting. The meeting will be the one of the largest gatherings of FSHD patients, clinicians and researchers providing two days of immersive learning and community-building. The event will be held August 16-17, 2014 at the Westin Boston Waterfront hotel in Boston, Mass. Continue reading

FSH Society Announces Honorary Board Committed to Raising FSHD Awareness

The FSH Society, the Massachusetts-based non-profit organization that has transformed the science of the rare incurable disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Honorary Board. The board of fourteen distinguished celebrities will work in cooperation with the FSH Society to raise visibility of FSHD, a disease that remains relatively unknown but which is at a critical tipping point in its progress toward a cure.

“Some of our Honorary Board members have a personal connection to the disease, which spurs their dedication to raising awareness and funds that will ultimately find treatments and a cure,” said June Kinoshita, Executive Director of the FSH Society. “Others agreed to join when they learned about the devastating impact of FSHD on patients and families and the promising research that is giving us all so much hope. We look forward to working with all of our board members in the coming years to reach a broad audience with messages and campaigns that touch the hearts and minds of the public.”

Continue reading

GE Chairman’s Award Benefits FSH Muscular Dystrophy Research

When GE Aviation’s Vice President Mohammad Ehteshami was told that he had received the prestigious GE Chairman’s Award, he asked that the $25,000 be donated to the FSH Society, a Massachusetts-based charitable foundation that has transformed the science of a little-known disease, facioscapulohumeral muscular dystrophy (FSHD).

“FSHD has impacted someone very dear to me, and I therefore wanted to do my part in helping to fund the research for finding a cure,” Ehtashami told the FSH Society.

FSHD is one of the most common muscle dystrophies. The genetic disorder typically attacks the muscles of the face (facio), shoulder blades (scapula) and arms (humerus), but can progress to affect all skeletal muscles. Approximately one-quarter to one-third of patients end up in wheelchairs. FSHD affects more than half a million people around the world.

Every year, GE Chairman of the Board and CEO Jeff Immelt recognizes leaders from across the company with the annual Chairman’s Awards for their outstanding performance and leadership. Those who receive the Chairman’s Award have the honor of selecting a non-profit of their choice to receive a $25,000 monetary donation from GE.

This year, Ehteshami, who is Vice President for New Product Introduction Engineering Operations at GE Aviation, was recognized for his domain expertise and technology leadership in 2013.

“We congratulate Mr. Ehtashami on the recognition he has received from his company and are deeply honored that he chose the FSH Society to receive this generous donation,” said FSH Society Executive Director June Kinoshita. “FSHD is among the most prevalent muscular dystrophies, but is little known to the public, so corporate philanthropy is immensely important in helping to raise awareness and much-needed funds.”

Second Annual Hustle for Muscle Golf Tournament to Raise Funds for FSH Muscular Dystrophy

Today the FSH Society announced the second annual Hustle for Muscle Golf Tournament taking place on Friday, October 4 in Abilene, TX. The tournament and silent and live auction will be held at the Abilene Country Club with proceeds to benefit FSH Muscular Dystrophy research through the FSH Society.

FSHD, one of the most prevalent types of muscular dystrophy, is a degenerative muscle disease that causes progressive weakness, usually starting with the face, shoulder and arms, but which can attack almost any skeletal muscle. FSHD affects approximately 500,000 people worldwide and between one and two percent of the population carries a genetic trait that places future generations at risk of the disease. Currently, there is no treatment or cure.

Continue reading