Blazing a Trail to the Future

Piggyback Adventurers Spencer and Carden Wyckoff take on the Appalachian Trail.
Piggyback Adventurers Spencer and Carden Wyckoff take on the Appalachian Trail. Together, we can beat this disease.

You inspire me!

You have faithfully supported, worked, and engaged your network and loved ones to join our quest for treatments and a cure for FSHD. I want to acknowledge our deep appreciation for your past support and generosity. Many of the advancements of this year would not have been possible without you.

It has been said that “There is no freeway to the future. No paved highway from here to tomorrow. There is only wilderness. Only uncertain terrain. There are no road maps. No signposts. So pioneering leaders rely upon a compass and a dream!” You have been among those trailblazing leaders who have embraced a hope-filled future for all of our families. Thank you for daring to dream.

“Getting ready for clinical trials is like climbing a huge mountain. And if your’e a mountain climber, you know the most important thing is to take the first step. The FSH Society helps people take that first step.”

- Jeffrey Statland, MD

In my brief time at the FSH Society, I have met with researchers, pharmaceutical industry executives, and, most importantly, families living and coping with FSHD. I am motivated by your vision of a world free of FSHD―and yes, there can be such a day!

The entrepreneurial spirit that suffuses the Society has brought us far. We know we need to do more. Going forward, we will expand our organizational capacity with the goal of making faster progress toward treatments and ultimately a cure. And we will continue to walk alongside you and your family throughout your difficult struggles with FSHD.

In the past few years, we have seen incredible change, growth, and progress in worldwide FSHD research and therapeutic development. The FSH Society embraces these advances as we look with great hope toward 2018 and beyond.

With your support, we have…

  • Created the Clinical Trial Research Network with seven sites across the country to provide the foundation now for the treatments that are in development
  • Established almost 30 local communities of activists working at the grassroots level to effect change
  • Funded over $9 million in research programs that are identifying numerous ways to treat FSHD, developing cells and mice to test new drugs, and building tools to prove that a treatment is working

We have a renewed sense of urgency. The former CEO of Eli Lilly Pharmaceuticals always ended staff meetings with the reminder, “Never forget, the patient is waiting.” During the past year, hundreds of patients have joined, acted, empowered themselves, and contributed to our mission. We recognize that time equals lives, and we must find a way to bring safe and effective treatments to our patient community much more quickly! The entire FSHD community must ask ourselves the questions, If not us―who? If not now―when?

We have an undeniable sense of optimism. We have entered a convergence zone―a “tipping point”―of activity in our field. Researchers confirm the time to step up our game is NOW! More pharmaceutical companies are working to find solutions, the global FSHD environment has deepened with new discoveries, and, through your continued support, we are funding cutting-edge research to continue the pipeline of potential therapies.

We have a clear and certain sense of direction. Every pioneering enterprise needs a compass, and that is what you, the FSHD community, are to us, our true north, showing us the road we need to travel. We are confident in our path, processes, and partnerships. We are funding and partnering with world-renowned researchers and industry leaders, all working together to bring discoveries out of the laboratory and into the clinic―tirelessly pushing to expedite treatments to patients.

“The FSH Society is a prime example of a non-profit organization that puts patients first.”

- Aya Yadlin-Segal

Still, there is a daunting path before us. We don’t have a firm grasp on disease progression. There are no treatments. For the many FSHD sufferers and their families, for every researcher and pharmaceutical firm now fighting FSHD, it is unacceptable that we are still so far from our goals. Together, though, with a clear sense of urgency, optimism, and direction, we can make significant progress in the coming year.

I am asking you today to join with thousands of individuals and families like yours and consider a gift in this year. By doing so, you will align yourself with other committed activists who know that a cure is out there, and that we must be responsible for finding it. If ALL of us push together, we WILL move the needle on FSHD research and therapeutic development in the next few years.

Thank you once again for your passion and commitment to ending FSHD. Your devotion inspires me and many others every day.

Working together to change our world,

Mark Stone
President & CEO
FSH Society

Our year-end challenge

The people who serve on our Board of Directors have seen the powerful impact of their support. These visionary leaders have pledged $370,000 to our 2017 Campaign, and challenge you to match it, dollar for dollar. Make your gift before 11:59 p.m. on December 31, 2017, to be counted.

It’s easy to donate:

  • Mail a check to the FSH Society, 450 Bedford Street, Lexington, MA 02420. This wills aveus credit card processing fees.
  • Give online.
  • Call Kathryn Puzzanghera at 781-301-7301


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