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October 28, 2013
1 person found this review helpful

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October 28, 2013
1 person 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.

More feedback...

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

October 28, 2013

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October 28, 2013

The FSH Society has been remarkable in promoting and securing funding for FSH research in the US and globally. They also provide great support and empower people with FSH to connect and share information and experiences proactively and positively.

Ways to make it better...

If I had to make changes to this organization, I would...

Secure more funding for the charity.

More feedback...

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

A lot

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

October 28, 2013

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October 28, 2013

As a graduate student working on a project related to FSHD, I'm really amazed by the work being done and the passion in this organization. They not only provide support for research but also push the field forward. Connecting researchers with patients makes the scientists think more about possible treatment, and keeps them motivated in the research in this filed.

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How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

October 28, 2013
1 person found this review helpful

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October 28, 2013
1 person found this review helpful

This organisation gives great support and hope to both sufferers and carers !

Ways to make it better...

If I had to make changes to this organization, I would...

.

More feedback...

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?

Quite well

When was your last experience with this nonprofit?

2013

October 28, 2013
1 person found this review helpful

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October 28, 2013
1 person found this review helpful

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.

Ways to make it better...

If I had to make changes to this organization, I would...

work to have a more national presence, so we could reach more FSHDers & make others aware of this dystropy.

More feedback...

Was your donation impactful?

Definitely

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

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

October 28, 2013
1 person found this review helpful

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October 28, 2013
1 person found this review helpful

Believing that you are a healthy person, and then learning in your twenties that you have a progressive muscle disorder can be devastating. Perhaps even more difficult is knowing your children have a 50% chance of inheriting this disease, and there are no proven cures or treatments. FSHD has a history of being behind the 8-ball in terms of funding and scientific discovery. However, organizations like the FSHD Society are instrumental in fostering education, awareness, advocacy, and contributing to incredible strides in research over the last few decades.

When my mother was finally diagnosed (after years of doctors telling her an atypical virus caused the weakness in her arms), she met with the FSHD Society. She was treated with kindness and compassion and gained education and knowledge. The FSHD Society is talented and dedicated giving families like mine answers, as well as HOPE that a treatment or cure is on the brink!

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 28, 2013
1 person found this review helpful

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October 28, 2013
1 person found this review helpful

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

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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

October 28, 2013
1 person found this review helpful

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October 28, 2013
1 person found this review helpful

I was Dx'd with FSHD in 1998 and knew next to nothing about the disease. I started searching on the Internet and found a member of the FSH Society, who invited me to a chat, and finally I was in touch with Carol Perez. I also met others online with FSHD. The following year I stated attending the conferences and really was helped by meeting everyone face to face, plus all the information learned from the researchers, physicians, guest speakers, etc. the Society (carol) put me in touch with someone near me and we co-hosted a support group. The FSH Society is invaluable in my life!

More feedback...

Would you volunteer for this group again?

Likely

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

Some

Did the organization use your time wisely?

Okay

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 10, 2013
2 people found this review helpful

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October 10, 2013
2 people found this review helpful

Misdiagnosed in my 50s, I was finally diagnosed after 6 Healthcare Professionals gave up. Looking back, my mother like many, never knew she had FSHD, why her arm never healed properly, or why she lacked strength and energy.

Fortunately I discovered the FSH-Society's online Support Group
Forum -- (now some 1000 members and 23,000-posts since 2007). For me, the forum has been a daily society of friends sharing information, support and resources.

From the Forum's knowledgeable support from folks who've been there, I found the sponsoring FSH Society, a small grassroots group who decided to do something themselves, and remarkably has made so much happen in FSHD research, education, communication and support.

Besides The Support Group Forum, the FSH-Society has been an aggressive leader in fund-raising and funding basic research into our especially unique and interesting disorder. It's uniqueness and variability makes FSH especially interesting for research at the genetic and micro-cellular levels.

And our preliminary research is finally showing promising preliminary results -- a strong presence in a broad multidisciplinary multi-disorder attack. Now that we have preliminary results, mainstream research is finding FSHD more interesting.

Based on preliminary results, research is now at several break-out points, where we know what needs to be done; and it just takes resources to do it. Of course problems will arise; however, due to FSHD's uniqueness, each problem generally provides even more insights as to specifics of the disorders.

Besides research, our FSH-Society sponsors innovative Patient Researcher Conferences, where hundreds of Patients, Caregivers, Researchers and Organizers gather from the US and around the world, sharing knowledge, experiences and insights. Meanwhile our FSH-Society provides quality information to patients and the Research, Healthcare and Caregiver communities about numerous specific and important FSH-Care issues.

While I hate what this "damnable-disorder" is doing to my body -- I couldn't be associating with a better group of people. And FSHD is such a unique interesting asymmetrical disorder -- we have great hopes that FSHD can provide innovative insights into a whole family of similar genetic, cellular disorders.

It's an unfortunate congregation we share, but one with great promise. And now with a strong history of success, good people, and hopefully a rewarding future - our FSH-Society is in position to both serve more FSH-People, and eventually help solve the FSHD-Puzzle.
--jim_fox

Ways to make it better...

If I had to make changes to this organization, I would...

Support the FSH-Society more -- it has a solid history and since we generally know what needs to be done, we just need more resources to keep doing it.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2013

October 8, 2013
3 people found this review helpful

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October 8, 2013
3 people found this review helpful

I have been associated with the FSH Society since 1996 when I was diagnosed with FSH. I immediately joined the FSH Society. I met Daniel Perez several years later when I worked with him as a volunteer at a conference in Philadelphia, PA. He has been a steadying influence in my life through his efforts with FSH Society and it's newsletter by enabling me to understand my disease.

Recently I was having problems finding a surgeon willing to perform orthopedic hip replacement surgery on me due to me having FSH. I contacted June Kinoshita of the FSH Society for assistance. Through her networking of various doctors she was able to locate and get orthpedic surgeons who had successfully performed hip replacement surgery on patients with FSH. These doctors then responded to her with their medical anaylsis in medical terms and she in turn forwarded to me. I then was able to show them to my local orthopedic surgeon in Savannah, GA who agreed to perform hip relpacement surgery on me.

The FSH Society has been a valuable asset to me and I wholeheartidly endorse them. Elizabeth L. Niner, Hilton Head Island, SC

More feedback...

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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