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Nonprofit Overview

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

Mission: Be the premier catalyst for connecting all the stakeholders. Promote research focused on FSHD, through thought leadership, networking and funding.

Results: Thousands of FSHD patients and families served. Over $4.4 million in grants to fund scientific and medical research. Seed grants led to the discovery of the genetic mechanism of FSHD.

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

Direct beneficiaries per year: 3,000 patients and funded over a dozen research studies.

Geographic areas served: all regions of the world

Programs: grant funding for FSHD research; outreach, education and support for patients and families; advocacy for FSHD patients' interests with the federal government and funding organizations.

Community Stories

51 Stories from Volunteers, Donors & Supporters

3 Linda295

Client Served

Rating: 5

The FSH Society has been very helpful to me. I call them with medical questions and if they don't know the answer they will contact someone else who does. They maintain current and extensive literature about FSH for patients, families and professionals alike; whenever I go to see a new provider I always take their literature since generally the new provider doesn't know much about FSH. The Society also posts relevant information on Facebook frequently which keeps us "in-the-know" about research, trials and opportunities to be involved in FSH research as well.

Previous Stories
4

Client Served

Rating: 5

This last yr I contacted the FSH Society about a FSH related medical problem I was having and to ask for suggestions. The Director responded to my inquiry almost immediately and contacted a specialist that she knew. She got back to me with a possible solution the very next day. I was very appreciative of the way my inquiry was addressed.

1 Rachel184

General Member of the Public

Rating: 5

very good group involved closely with the people who have this disease. to many groups do not involve people who have the ailment they support but this one is very involved with the actual people with FSHD

3

Client Served

Rating: 5

The FSH society is a supportive and informative non-for-profit organization, that puts its patients' needs first. They work towards research and advocacy for FSHD, and do it well. They are always their with answers and helpful information, keeping up with ground breaking research as well as with listening and understanding the community they serve.

4 Rich H.

Volunteer

Rating: 5

I have been involved with the FSH Society as a patient, volunteer and donor for many years. With a small, dedicated staff, it has spread information about this largely ignored form of muscular dystrophy, raising awareness that FSHD is one the three most prevalent types of MD. The nonprofit has also pulled together an international group of researchers to work on understanding the causes of FSHD and possible treatments. With its program of making seed grants, scientists are able to do the prerequisite groundwork needed to qualify for NIH grants to expand their research efforts. The Society continues to earn 4-star ratings from Charity Navigator for its efficiency, transparency and adherence to its mission.

3

Client Served

Rating: 5

The FSH Society is a well run and caring nonprofit organization. They are earnest and sincere in their approach to funding research necessary for the improvement of life for individuals who suffer from Facioscapulohumeral Muscular Dystrophy. They also carry a bright torch to Washington DC promoting issues important for funding and the challenges of those who deal with FSH everyday. I enjoy my interaction with June Kinoshita, Excecutive Director. She has been instrumental in "getting the word out".

5 LucyCleo L.

Donor

Rating: 5

Exceptionally well run non profit, great patient advocacy, excellent resource for referrals and information. Kudos to June Kinoshita who not only does a great job from an administrative standpoint, she is very knowledgeable of the medical and research aspects of FSHD, to the benefit of patients and their families.

4 Tanya34

Client Served

Rating: 5

Always helpful when needing information and relentless in pursuit of a cure, the Society is there to do what needs done for my son and my family. I will be grateful forever for their support.

4 Christy45

Client Served

Rating: 5

FSH Society works tirelessly to help fund research to find a cure for all affected by FSHD. Amazing organization!!

3

Client Served

Rating: 5

I've learned so much over the years from the FSH Society!

Previous Stories
3

Client Served

Rating: 5

This organization has been a wonderful resource for my family; particularly when we were feeling lost. Thank you FSH Society!

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3 Leonard K.

Client Served

Rating: 4

Wonderful, targeted contemporary resource. Shared ideas help our group to understand that we are not alone.