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Facioscapulohumeral Society

Rating: 5 stars   40 reviews 888

Nonprofit Issues:

Health

Address:

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.

2015 Top-Rated Nonprofit
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More Info

781-301-6060
http://www.fshsociety.org

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Reviews for Facioscapulohumeral Society

Rating: 5 stars  

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

 
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Rating: 5 stars  

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.

 
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Rating: 5 stars  

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.

 
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Rating: 5 stars  

2 people found this review helpful

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.

 
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Rating: 5 stars  

1 person found this review helpful

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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1 previous review
Rating: 5 stars  

2 people 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: Client Served
Rating: 5 stars  

1 person found this review helpful

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

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

What a wonderful resource for those newly diagnosed and seasoned veterans of FSHD.

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?

2013

 
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Rating: 5 stars  

1 person found this review helpful

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.

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

The FSH Society is great on educating about the disease.

 
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Rating: 5 stars  

1 person found this review helpful

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.

 
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Rating: 5 stars  

1 person found this review helpful

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.

 
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