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2019 Top-Rated Nonprofit

Facioscapulohumeral Society

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Nerve, Muscle & Bone Diseases Research

Mission: Accelerate research on treatments and a cure for FSH muscular dystrophy. We do so by investing in game-changing research initiatives, and by educating, empowering, and activating our stakeholders.

Results: Thousands of FSHD patients and families served. Over $10 million in grants to fund scientific and medical research. Our grants helped to launch the field of FSHD research and have led to the discovery of the genetic cause, development of cellular and animal models, validation of clinical trial endpoints, and other breakthroughs. In 2016, the FSH Society helped to launch the FSHD Clinical Trial Research Network.

Target demographics: patients, families, researchers and clinicians with an interest in FSH muscular dystrophy

Direct beneficiaries per year: 3,000 patients and funded $1.4 million in research grants.

Geographic areas served: all regions of the world

Programs: funding and leading initiatives to accelerate therapy development; engaging and activating patients and families; advocacy with the federal government, industry, and funding organizations.

Community Stories

94 Stories from Volunteers, Donors & Supporters

1

General Member of the Public

Rating: 5

This non-profit has been a life saver to me. It has been a great resource and community for all of my questions and concerns. I was diagnosed with FSHD many years ago and this non-profit is a safe place for me.

1 Eileen H.2

Client Served

Rating: 5

Have been involved with/known of The FSH Society for years. I am third generation diagnosed with FSH. The support, research, information and pure hope the organization gives to those affected is immeasurable. I am grateful they exist and hope others will find them and us a worthy charity to invest their time or money in.

1 Crystal74

Client Served

Rating: 5

The webinars seem to always be timely, with experts in various fields as presenters.
I was diagnosed in 2011 by Dr. Tawil, the FSHD Society continues to be an excellent source of information. I appreciate the updates on research trials.

Previous Stories
3

Client Served

Rating: 5

FSH Society has been the best, most reliable source for dealing with this horrible disease.

1 Anne H. Mom

Client Served

Rating: 5

Out of the blue, when as a teenager the sky was her only limit, our daughter got diagnosed with FSHD. It was a shock to learn that this progressive chronic deterioration was something she could not out run ; nor would it allow her to stay the competitive athletic girl she was, whispering all day long with horses. She was facing this feeling to be helpless in her own body.

Joining the FSHD Society provided us with both information and resource, and great support among its global community. The way we discussed groundbreaking research lifted our spirits and stimulated our hope for the future. A large door opened to a new community and a new purpose. Dealing alone with this disease can give a feeling of abandon and loneliness, especially when your teenager wants to keep it confidential. Having a community to share the experiences makes a world of difference.  Meeting people who went trough similar yet different challenges and working towards a future with hope convinces us that future can still be bright .
After digesting fear, rebellion and frustration, our daughter decided she could no longer feel sorry about herself, but had to cope, stand up, be involved and accomplish a mission of spreading hope. Thank you FSHD society for your very personalized contact ;-)


1 Tom M.8

Donor

Rating: 5

I first learned of this non-profit many years ago when attending one of the early walk 'n' roll events on Cape Cod. I have been supporting this charity ever since. It plays a critical role in bringing researchers, patients and supporters together, and has resulted in tremendous advances being made over the last few years in particular towarda a treatment and hopefully someday, a cure. Always very highly rated and respected, driven by a team of very dedicated people.

1 dbyounger

Client Served

Rating: 5

The FSH Society has filled such a crucial
need for patients, families, and scientists. We are on the road to a cure and it is thanks to the the tireless work if the FSH Society.

2 Kathy S.4

Volunteer

Rating: 5

The FSHD Society has been instrumental in joining the local and international community of like-minded individuals dedicated to finding a treatment and cure for FSHD. The FSHD Society has provided a supportive platform for the growing number of state chapter groups across America, training for the Chapter Directors and Walk and Roll Leaders, and keeps members and the public up-to-date with the lasted developments in research and relevant information. I can't say enough good things about the FHSD Society. Because of their hard work, dedication, and knowledge, the hundreds of thousands of us impacted with this disease have a hopeful and optimistic future.

1

Volunteer

Rating: 5

I learned my husband and son had FSH muscular dystrophy late in 2017. Our family had never heard of this type of MD. We were familiar only with the Jerry Lewis telethons of our childhood. I contacted the FSH Society (going forward the FSHD Society) and was profoundly impressed with its expediency in responding to my call for help. Everyone associated with the Society is caring, professional, and goes the extra mile for patients and their families.
Over the past two years we have been extremely involved in advocating and building awareness of FSHD and with the Society’s help have started a Chapter here in Columbus Ohio and are making preparations to hold our 2nd annual Walk & Roll to Cure FSHD.
The FSH Society (FSHD Society) publishes an extremely educational and reader-friendly newsletter called The Advocate and offers countless ways to learn about the disease, become connected with others who are dealing with the disease either through diagnoses or support roles, and get involved in advocacy through its Chapter program and fundraising opportunities.
Its President, Mark Stone, is leading the charge to fund the most promising research from around the globe. Funds received are spent efficiently and transparency in where the dollars are allocated can easily be located on its website.
The gene causing this disease was identified in 2010 and we are impressed with the urgency and collaboration by those working on treatments and a cure as opposed to competition and secrecy. I owe that collaborative culture to Mark Stone and all who work on behalf of this disease.

1 Amanda A. H.

Volunteer

Rating: 5

Incredibly supportive community for patients and families, working hard to advance science and find a cure. Very impressed with this organization and every person I have met who works with them!

1 Allison Gatrell C.

Donor

Rating: 5

When my husband was diagnosed with FSHD the FSH Society immediately provided many great resources and a fantastic support system. The educational opportunities and local chapters have been fantastic as well. We're happy to see how much progress has been made in research thanks to the FSH Society's management of funds.

1 Erin Farr G.

Donor

Rating: 5

My extended family is heavily affected by FSHD and yet there was so much I did not know about it. I have learned valuable information through the FSH Society videos, newsletter and Facebook page. They are truly committed to helping the community through funding research and providing information. I know my donations to them are put to good use.

1

General Member of the Public

Rating: 5

When my husband was diagnosed I found a lot of great information on the FSH Society website. They are an amazing organization who’s goal is to raise awareness and funds to find a treatment/cure for this debilitating disease. The Walk & Roll event was so fun & successful! Everyone was kind, helpful & understanding.

1

Client Served

Rating: 5

This non-profit was a God send to me when I was diagnosed! I have been the biggest supporter/advocate and ambassador since 2014!

1

General Member of the Public

Rating: 5

When my daughter was diagnosed at age 18 months I was scared! I contacted the FHS Society and they was so helpful❤️

1 Daniel O C.

Volunteer

Rating: 5

Un grupo muy activo y apasionado. En el Día Mundial de la Distrofia Muscular Facioescapulohumeral (FSHD) del El 20 Junio son protagonistas y desde Argentina el grupo MostrArte ADM nos sumamos. Es increíble ver el crecimiento de la organización en los últimos años.

1 Jim C.7

Board Member

Rating: 5

The FSH Society is an advocate for patients and their families. The Society has outstanding ratings from several firms which rate non profit financial efficiency and effectiveness. It continues to fund cutting edge research. It also hosts conferences for researchers, clinicians and pharmaceutical companies worldwide to coordinate information and research . Its small staff and volunteer Board of Directors are committed to delivering a game changing drug by 2025.

1 Susan F.2

Client Served

Rating: 5

Great organization helping people with FSHD and their families, with research, knowledge and support. With help a cure will come.

1 Nicky Williams D.

Client Served

Rating: 5

An amazing charity that does everything they can to help the FSH community!

1

Volunteer

Rating: 5

Extremely passionate, organized and bringing important awareness to FSH

1 Tim H.3

Volunteer

Rating: 5

When I was diagnosed with FSHD I was lost confused didn't know where to turn for answers. My family even had a hard time relating to what I was dealing with. Then I found the FSH Society. A light in the dark. Place of support. A place for good, quality information. I quickly raise my hand to volunteer for the society. And for the past 2 years I have been the host for the FSH Society Radio Show. Thank God for this place.

Previous Stories
3

Volunteer

Rating: 5

This organization was a true help. A place I trust for accurate information on dealing with this disease.