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2017 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 $9 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: 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

64 Stories from Volunteers, Donors & Supporters

3 Leigh Crocker S.

Donor

Rating: 5

We are honored to be part of The FSH Society Family. My husband has the disease and 4 members of my family had/have the disease. With 2 kids of our own, we are highly motivated to help find a cure. The FSH Society is the catalyst of many research studies and partnerships between different research agencies across the world so that all information can be shared. How amazing! The Society is a great resource for information about FSHD. Their 5 star Charity Navigator rating tells you that they spend their money wisely with most of it going to charitable causes and very little going to administrative expenses. We participated in a local fundraiser and the president of the Society came to our event. What terrific support they give to their local chapters that are spread across the country. What an amazing organization!!

3 Selina L.

Volunteer

Rating: 5

The FSH Society has been connecting patients to important research and education for over 20 years. Their strategic planning has been instrumental in moving this community forward towards possible treatments for this debilitating disease that impacts close to 1 million persons worldwide. Patients and their families build personal connections to researchers and each other that improves well-being and gives hope to all. Thank you FSH Society for supporting the FSHD community!

2

Client Served

Rating: 5

A great resource to go to in time of need, and a beautiful community that was built around a shared wish and vision. Always helping, up to date on all related fronts. I find the FSH society a prime example of a nonprofit organization that puts its patients first.

2

Volunteer

Rating: 5

I am not a sufferer but I have been involved with the FSH Society for five years. During that time, I have been continually impressed with their work towards finding treatment and a cure for the terrible, debilitating disease that is FSH Muscular Dystrophy.

The Society's commitment is well-evidenced not only by the breadth of patient services they provide. More importantly, their leadership in creating collaboration & communication between disparate entities in the scientific community continues to drive groundbreaking neuromuscular and genetic research, and their partnership in nationwide clinical studies of pharmaceutical treatments are already proving to be very promising.

The FSH Society is extraordinary, and inspires real and rational hope for FSH Muscular Dystrophy sufferers.

2

Client Served

Rating: 5

We are so very luck to have found the FSH Society 25 years ago! My husband has FSH Muscular Dystrophy. His disease has progressed over the last 25 years and we have had the support and information that the FSH Society provides during this time. We have a great community of people in Los Angeles that meet and we have formed great friendships at these meetings! We benefit from the nation wide fundraising that the FSH Society provides! They have funded Scientific studies and have helped to find the genetic marker and cause for this disease. There are now clinics and Neuro Physical Therapy offered to people who suffer from this disease, and within the next 5-10 years we expect there will be a treatment and cure available! Without the FSH Society we would not have this connection to Hope that they offer. We give the Society our highest rating!!

2 Heidy K.

Client Served

Rating: 5

After 25 years of symptoms, I received my FSH diagnosis 2 months ago. The FSH Society was my first step toward acceptance and emotional healing. Forever grateful! That's me, a competitive ballroom dancer, not giving up.

2

Client Served

Rating: 5

The FSH Society provides understanding, resources, research and (best of all) hope to patients and families with FSH Dystrophy.

Previous Stories
5

Client Served

Rating: 5

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

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2

Client Served

Rating: 5

The FSH Society was there for us when we had no where else to turn. Thank You.

3 Tim H.3

Volunteer

Rating: 5

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

2 Lee B.1

Client Served

Rating: 5

Thanks June K for your tireless efforts while director and thanks for shining the light on such a dark unknown by many awful Disease. Over 90 cents on every dollar raised goes to research Treatments cures. Thanks

3

Client Served

Rating: 5

As a person with Facioscapulohumeral Muscular Dystrophy, I can attest that before the FSH Society existed, no one, including the MDA, was paying any real attention to this devastating disease. The FSH Society has been essential in getting research done and getting information to patients, and they do it professionally, efficiently, and effectively.

2

Volunteer

Rating: 5

The FSH Society provided my family with the support and information we desperately needed after my husband was diagnosed with FSH Muscular Dystrophy (FSHD). It enabled us to meet others facing the same unknown, and be a part of the patient community so we wouldn't have to face the disease alone.

3 Shruthi M.

General Member of the Public

Rating: 5

I found the FSH society through an internet search and reached out to them with questions about a relative's health condition. They were prompt in responding to all my queries over email and putting me in contact with physicians to consult. Recently, I had the chance to network with them. I have learned a lot from the society. Being a small team, they have achieved a great deal and are on a mission to accomplish a lot more. I look forward to helping them, in any way I can, to educate people about FSHD.

5 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
7

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.

3 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

5

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.

5 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.

4

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".

6 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.

6 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.