FACIOSCAPULOHUMERAL SOCIETY

Rating: 5 stars   26 reviews

Issues: Health

Location: 450 Bedford St. Lexington MA 02420 USA

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.
2014 Top-Rated Nonprofit
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More Info

EIN 52-1762747
781-301-6060
http://www.fshsociety.org
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

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.

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1 previous review
Rating: 5 stars  

2 people found this review helpful

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.

Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Likely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

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Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

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.

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Rating: 5 stars  

1 person found this review helpful

The FSH Society is a phenomenal non profit organization that especially focuses on linking the community of affected individuals and family members together. The way this is done is via social media outlets such as Facebook and Twitter. Social media allows meMyers to vent, ask questions, and connect. Personally I find this very helpful to know there are other people out there who understand what I'm going through. The other reason this organization is awesome is how involved the scientific community is about sharing the latest information. I always feel informed of the latest discoveries and always know researchers and clinicians are working hard towards finding a possible cure or therapeutic targets.

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Rating: 5 stars  

1 person found this review helpful

I don't know where we would be right now without the FSH Society. My husband was diagnosed with FSH Muscular Dystrophy about a year and a half ago....I was devastated and lost until I found them on the web. Their website was so friendly and so helpful to me it directed me to a page for community support. Right then and there I was able to get a phone number of someone I could talk to about living with FSHD and ask questions about how family members can support him . I was quickly put in contact with a male of the same age as my husband with very similar progression of the muscle weakening patterns. June Kinoshita was beyond helpful with her time and her empathy. After a few conversations and contacts I was able to think more clearly about what all of this diagnosis meant to us. I was also invited to join a facebook group which has been enlightening for me to learn so much for a beautiful group of members suffering from the same life changing disease. This nonprofit works so hard to make a difference for those afflicted. So many suffer and it would be so nice to have a cure.
I look to the FSH Society to research, speak up for, inform all of it's members as to new studies and findings (as they do so well). I have so much confidence in them and their urgent activity to find a cure. I really really really do not know what I would do without the professionalism of the FSH Society and my contact person June Kinoshita.
JVisco

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

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Thank you so much for your wonderful comment. Knowing that we can help families feel less alone, and introducing them to the amazing community of patients, is very meaningful to us.

Rating: 5 stars  

1 person found this review helpful

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.

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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

My baby grandson has IFSH as well as Coats disease in both eyes. It is a whole, new world for us now, and this organization, which gets Charity Navigator' highest rating, is a godsend to so very many of those who are afflicted with this horrible disease, as well as to those of us who love and care for them. Cannot praise them enough!

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Rating: 5 stars  

I have been involved with the FSH society for over 10 years. My daughter and I both suffer from FSH and found the FSH Society by chance. I love June because she is always so helpful whenever I have a question about new research that has been released and I don't completely understand it or even being able to point me into the right directions of local resources to help me. The FSH Society is a great help to all of us who suffer from FSH and our families!

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Rating: 5 stars  

2 people found this review helpful

The FSH Society has been instrumental in navigating life after my son's diagnosis. Through the Society we have been able to network with others, learn about the latest research and studies, and gain a greater understanding of the disease itself. The Society is so helpful and reaches out to all of those affected by FSH. Their biannual conferences are simply invaluable. They work tirelessly to spread awareness and raise money for research. When you donate money, you are able to specify how you want your funds applied. I recently donated and wanted my money to go toward education and research. By giving me the option of how to use my funds, I have such a peace of mind that this charity is "the real deal." I have to say the absolute best parts of the Society are the sense of community and the knowledge of the disease that we simply cannot get from anywhere else. Most doctors have little to no understanding of FSH making the mere exsistence of the FSH Society crucial.

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Rating: 5 stars  

2 people found this review helpful

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.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Rating: 5 stars  

The FSH Society has been soo supportive of me and others who have FSHD Muscular Dystrophy. The research they help provide is the most up-to-date comprehensive and informative and will one day make our cure a reality. Thank you sooo much FSH Society for all that you do for FSHD Muscular Dystrophy!

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Thank you Trisha for all you do to raise awareness and build the community!