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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.

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3

Client Served

Rating: 5

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

2 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.

2

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.

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3

Volunteer

Rating: 5

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

1 Meredith H.1

Volunteer

Rating: 5

Very supportive and passionate group of individuals. It's incredible to see the organization's growth over the past couple of years.

1 Ian R.1

Client Served

Rating: 5

A wonderful charity that helps so many people with FSH.
The FSH Society gave me the opportunity to meet with dr.s that know exactly what I have. They also gave me the opportunity to meet another FSH’er for the FIRST time. I am 52 years old.

1 Tracey J.1

General Member of the Public

Rating: 5

I am from the land downunder, Sunny Queensland Australia. I live with FSH and I myself advocate on behalf of my FSH friends and family. It doesn't matter where you live .... what matters is that we all join together as one voice and raise the awareness of this devastating disease and how it affects us all.
Raising awareness and funds is FSH Society's mission and I've had the pleasure of connecting with the society and fellow members to help them get their message heard. The FSH Society is growing stronger every day and I believe with their dedication, understanding and respect for all who live with this disease, together, we, the world of Fsh'ers will find that cure.

1

General Member of the Public

Rating: 5

Hi I always like to read about FSHD muscular dystrophy. My husband has been diagnosed 2 years ago After battling with walking and pain for over 10 years. Finally he was diagnosed by a neurologist in Barcelona. They did the muscle biopsy and other tests and it was confirmed. He walks with difficulty and to go out we use the wheel chair or the scooter. Keep up Gad good work.

1

Volunteer

Rating: 5

The FSH Society is leading the way towards a cure for FSHD while building a strong community. Their communication, organization, leadership and heart truly set them apart!

1

Client Served

Rating: 5

As a parent of a son with FSHD this has been a valuable source of information and support. This disease is a form of muscular distrophy and many times hard to diagnose. When diagnosed it is overwhelming trying to find out what to do, what the future will bring, how to handle it, how others have found ways to endure, and what kinds of hope there is for the future. This is such an important resource.

1 Jeannette Campbell B.

General Member of the Public

Rating: 5

The FSH Society is a lifeline to information and support for all of us dealing with this disease. I’m so very appreciative of the dedicated work they do on our behalf.

2 Deborah79

Client Served

Rating: 5

The FSH Society is focused on research into a treatment for FSHD, while building a community of FSHers, who are actively involved with a search for a treatment. It is the clearing house for information, research projects that we are able to participate, meeting up with others with FSHD & the researchers, fundraising for more research & learning to live with FSHD. It has set the gold standard for research grants.

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3

Donor

Rating: 5

After 35 years of active sports, all those little things that made movements more difficult became really difficult. I had to stop swimming because I could no longer get my left arm out of the water. To brush my hair, I had to sit down & put my head between my knees, as I could not raise my arms high enough to brush. When I was dx'd, the FSH Society had not yet come into existence, but 2 years later, I spoke to Carol Perez and met her at a patient/researcher conference. I was no longer alone, there were others at various stages of FSHD. This was a lifeline for me, a source of knowledge that continues to grow constantly and is the leader in seed grants to promising ideas. Daniel has been stepping in for Carol's patient advocacy, in addition to his other jobs like testifying before Congress on the need for additional funding for FSHD at NIH.They have set the standard for all the other FSHD groups around the world and there are many.

1 Writer

Client Served

Rating: 5

The FSH Society is doing a wonderful work advocating for the need for FSHD related research, the advocate for the community, and raise awareness for the need of a cure.

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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.

1

Client Served

Rating: 5

My family appreciates the great support, both social and medical, from the FSH Society. The goals and research focus of the society are clearly stated and the plan to execute these goals have already been launched. Amazing indeed.

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2

Client Served

Rating: 5

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

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

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.

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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 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.

5 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 Leonard K.

Client Served

Rating: 4

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

7 Amy_128

Board Member

Rating: 5

For almost 20 years the FSH Society has been my lifeline to others with Facioscapulohumeral muscular dystrophy, FSHD is a muscle wasting disease that robs us of the ability to raise our arms to hold a baby, comb our hair or brush our teeth. Twenty percent of patients will eventually require use of a wheelchair. Offering access to clinical trials, testifying before Congress to increase research funding and providing seed grants throughout the world, the FSH Society has opened the door of hope for me. They make us all feel like family. It is for this reason that I have chosen to give back by becoming a board member and to be empowered through the FSH Society to prepare for the next generation of scientific advances. Here's to the day we can all raise our hands to the sky and firmly walk into a future with no FSHD!

Previous Stories
4

Volunteer

Rating: 5

As a volunteer and patient with FSHD I am proud to be associated with the FSH Society. They are professional, compassionate and completely focused on the task of supporting patients and research for a treatment for this disease. We are lucky to have an organization that is this dedicated to helping us.

4

Client Served

Rating: 5

My two sons and I were diagnosed with FSHD 25 years ago. Without the support of the FSH Society, life would have been so difficult. Having everyone there be at your side whenever help was needed, questions answered was a blessing. I have seen the progress made with generous donations towards research and getting some answers for this disease. Here's to all the progress made and looking forward to the future with everyone out there willing to donate and give their time with fundraising etc.
Mimi Brown

4

Client Served

Rating: 5

The FSH Society has been a great support to the FSH Community and has raised money to help fund research towards finding a treatment and raising awareness for this muscle wasting disease that has been overlooked for too long. When I was first diagnosed they were a great resource in learning about the disease and connecting me to a support group where I could ask questions of and talk with others dealing with living with FSH.

4 Mia A.

Client Served

Rating: 5

As a person living with FSH, I cannot express enough gratitude to the FSH Society for their endless effort and determination to find a treatment and cure. I can wholeheartedly count on literature provided by the society to share with my doctors and community to help raise awareness and understanding on how FSH affects us. Most of the literature that is available is outdated and inaccurate, but the FSH Society provides up-to-date material on what FSH really is. They have made more headway in the area of research in the last 10 years than any other organization in my lifetime of living with this debilitating condition. Thank you FSH Society, donors and researchers....your work is appreciated and does not go unnoticed.

4

General Member of the Public

Rating: 5

The FSH Society has been there for me when I needed it. It has provided me with very useful information, that I could pass onto my doctors (who were clueless). I am forever grateful to it.

3 Julie192

Client Served

Rating: 5

The FSH Society is a dedicated and exceptional organization committed to research and patient/ family networking. The FSH Society has had a positive impact on my life and has reinforced hope for many.

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3

Donor

Rating: 5

The FSH Society is a dedicated and committed group to all of us impacted by FSH muscular dystrophy. The focus on research, patients and caregivers is remarkable. The FSHD Society has made a tremendous impact to date however the work is not complete; they continue to dedicate all they have to the FSHD community and fight for a cure.

3 nbulian

Volunteer

Rating: 5

FSH Friends are awesome, they help and contain people for all over the world, they are doing a great job organization and researching for a cure, and this my friends gives us hope.

2 Amit B.

General Member of the Public

Rating: 5

The FSH Society is great on educating about the disease.

3

Client Served

Rating: 5

7 years ago one of my four children got his Diagnosis of FSH. I was stunned, confused, not educated. Through the FSH Society I learned more from the information provided than even his doctors could provide. Since his DX I learned that I too have it and two more of my kids have clinical signs. I use their website very frequently and print out information to give to our doctors to help them manage us. Other education materials they have I also shared with family and friends to help them understand our pain and limitations. I have met other patients and developed rich and special bonds with them. I would have never had my DX as i don't have the "classic symptoms" as my child does. It was with what i learned from them that helped me understand my own pain. The newsletters they put out I have copies of them all with me when I see new people. This organization has helped me more than I could ever say. I am so grateful for this life line. Thank you FSH Society for all you have done for bringing me some comfort as my family deals with this disabling disease.

2

Volunteer

Rating: 5

This non profit has been a life saver for me & my family. FSHD has a 50-50 chance of being passed on to children. Facioscapulohumeral Society (FSHD) keeps us up to date on research, procedures & fellowship. It gives us a lifeline to hold onto. Other families who are having the same difficulties as we are share information. Thank you FSHD for all your help.

3

Client Served

Rating: 5

FSH Society works tirelessly to support those diagnosed with FSH. When I was first diagnosed, they were instrumental in getting me in contact with others near me who also have this disease. Had it not been for those contacts and emotional support I got from this community, I am not sure how I would have managed that first year alone. They make all efforts to provide current and accurate information, support research and build a community where we can share our experiences both negative and positive. It is a wonderful organization, I can't imagine dealing with FSH without them.

3 Aya Y.

Client Served

Rating: 5

The Facioscapulohumeral Society provide us with great resource for individuals with FSH Muscular Dystrophy, their doctors, and their families both in terms of support and information. They are always looking for ways to help people with FSH to become a community, both online and offline. They also push towards more and more research on the topic that is then communicated by them to the wider audience. They are doing a great important job.

2

Volunteer

Rating: 5

The FSH Society is the single greatest resource for individuals with FSH Muscular Dystrophy and their families. No other organization is as dedicated and knowledgeable of this disease- the most common of the muscular dystrophies. Executive Director June Kinoshita is an incredible asset and personally available to members of the Society. I have never had anything less than a stellar, professional and fulfilling experience with the FSH Society.

4

Donor

Rating: 5

Having been associated with this organization since its inception in the early '90s, I can say with some authority that it has done more than any other single organization to advance the cause of understanding FSHD. The FSH Society has leveraged modest resources to great effect, driving new research pathways, working legislative issues, and connecting an international community of patients, advocates, and researchers. Few organizations have done so much with available resources.

Previous Stories
4

Donor

Rating: 5

The FSH Society has leveraged a modest revenue stream to fundamentally change and advance the state of research in the field of FSH. They have executed on a nearly 20 year strategy to build a cadre of researchers focused on this important disease by providing seed funding to promising post grad students and working the political system to ensure NIH can address FSH in some way. They have shown perseverance, creativity, and savvy as they sought to build an infrastructure to understand and tackle this disease. As the years have gone by, the FSH Society has become the world-leader in gathering together researchers, patients, industry, and government to raise the level of knowledge about this complex disease. They continue to effect a range of outreach efforts to share knowledge and provide a venue for afflicted patients, their care givers, and their families to gather and convey information and learn from each other. From what I know, they've done all this with extremely low overhead and the vast majority of donations go to directly supporting furtherance of the organization's goals.

2

Professional with expertise in this field

Rating: 5

The FSH Society has served as the focal point for vetting of the science of FSHD, providing seed money for new ideas and backing the annual research meeting which has fostered a consensus understanding of disease mechanism. The society has done this with close patient and researcher networking which will ultimately enable clinical trials to proceed.