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Facioscapulohumeral Society

Rating: 4.98 stars   46 reviews 1,080

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  

1 person found this review helpful

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.

 
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Rating: 5 stars  

1 person found this review helpful

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.

 
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Rating: 5 stars  

1 person found this review helpful

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

 
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Role: Client Served
Rating: 5 stars  

1 person found this review helpful

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

 
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1 previous review
Rating: 5 stars  

3 people 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  

3 people 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: 4 stars  

2 people found this review helpful

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

 
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Rating: 5 stars  

5 people found this review helpful

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!

 
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1 previous review
Rating: 5 stars  

3 people found this review helpful

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

3 people found this review helpful

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  

3 people found this review helpful

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  

3 people found this review helpful

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  

4 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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