Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
62 Reviews
1234.983875
Previous | 1 2 3...6 |
Write A Review
July 31, 2014

more


1 previous review
November 15, 2012

BSF is both as a family, loving, helpful and supporting, and as a huge source of information. Even if our son is affected by a rare disease, we never feel alone, and BSF give us the strenght to live w... more

July 31, 2014

Amazing association, extremely active in fund raising, in raising awarness on a rare disease, on supporting affected families and promoting medical research

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?

2014

November 15, 2012
4 people found this review helpful

BSF is both as a family, loving, helpful and supporting, and as a huge source of information. Even if our son is affected by a rare disease, we never feel alone, and BSF give us the strenght to live with Barth Syndrome, and give us hope that the future of our kids will be brighter

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?

2012

September 18, 2014

more

September 18, 2014

Our son has been living with Barth Syndrome for 21 years. Since the very beginning, when 3 mothers found each other on the Internet, this Foundation has been second to none. To this day, it is, without question, a great source of information, guidance, education & support. In fact, there are two women specifically, Shelley Bowen & Lynda Sedefian, who deserve a loud, long, "Standing ovation"...
July 31, 2014

more

July 31, 2014

As a physician-scientist working in the field, I cannot say enough good things about the Barth Syndrome Foundation. Like many worthy non-profit organizations, they focus on a rare but devastating disease. Like many non-profits, they raise money for research and heighten awareness. Like many other non-profits, they are a tight-knit community. What I think sets the BSF apart is the biennial International Scientific, Medical, and Family Conference, which brings together not only scientists, doctors, and other healthcare professionals, but families and patients too. The conference then takes on a personal quality. The science and medicine of the disease we're discussing are intertwined with the personal side, at this truly inspiring conference.
The BSF website is also exemplary.

More feedback...

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?

2014

July 31, 2014

more


2 previous reviews - show all
September 5, 2013

I'm so proud to be a BSF board member. Our organization uses its limited resources very well. Our focus on finding treatments and a cure for Barth Syndrome are always foremost in our minds at the Bo... more

July 31, 2014

My experience as a board member for Barth Syndrome Foundation has been exceptional. The family services the organization provides and the quality of the research it funds are phenomenal for a rare genetic condition. I just returned from our international conference, which brought together affected individuals, researchers, doctors and other medical professionals, and friends and family members. It's a uniquely enriching experience for everyone who is part of our Barth "family".

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2014

September 5, 2013

I'm so proud to be a BSF board member. Our organization uses its limited resources very well. Our focus on finding treatments and a cure for Barth Syndrome are always foremost in our minds at the Board level. We dedicate ourselves to the boys with Barth and to their families every step of the way.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

November 12, 2012
7 people found this review helpful

As a board member, I've been impressed by how much BSF does with its limited resources and the sense of family and community that BSF fosters. The mission is very clear to everyone - we will never stop working to find a cure for Barth Syndrome. In the meantime, we will provide support for families, educate the medical community about Barth and fund critical research that leads to improved treatments. BSF has only been in existance for less than two decades but it has made a world of difference in the lives of those with Barth and their families.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

July 31, 2014

more

July 31, 2014

The Barth Syndrome Foundation and their affiliate the Barth Syndrome Trust in UK changed my life. I am a mother of a person with Barth Syndrome. The support and information we received from this organisation helped me strongly in finding my way to cope in a better way with this terrible disease.
The doctors of my son get better information about treatments that work and about those that don't work. The BSF finances very important research, that is not only important for patients with Barth Syndrome, but that can be very helpful for other rare diseases and for widelyspread diseases as Alzheimer and neutropenia after cancer treatments. I met other affected families via meetings organised by BSF and many of those families have become real life friends and are more supportive and compassionate than my own family.

Ways to make it better...

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

give them more money to do more good work

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?

2014

July 30, 2014

more


1 previous review
November 15, 2012

Thanks to the Barth Syndrome Foundation's website for making us aware of our son's condition before the Doctors even diagnosed him! I truely believe BSF helped save my son's life! Here is our story:... more

July 30, 2014

My son has Barth Syndrome and the Barth Syndrome has not only saved his life through proper diagnosis of his disease but they continue to fight for a cure with cutting edge research. Heart on a chip using Barth Syndrome boys own IPS cells and replacement enzyme therapies are being studied to hopefully find a cure someday. The boys, families, doctors and scientists are all truly amazing! Parents of these boys raise alot of the money for the foundation by breaking boards in karate, fencing, grass volleyball, bowling, poker, bingo, jewelry sales, Iron-man races among many others.

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?

2014

November 15, 2012
3 people found this review helpful

Thanks to the Barth Syndrome Foundation's website for making us aware of our son's condition before the Doctors even diagnosed him! I truely believe BSF helped save my son's life! Here is our story: My son was in the hospital for 2 weeks at 3 months of age with failure to thrive and he had stopped eating by mouth. He had a NG tube put in and medications giving after finding out he was in heart failure. The subject of a heart transplant was brought up but his heart responded to the medication. Through blood tests we also found he was neutropenic so putting all the pieces together we searched the internet every chance we could and came upon a number of diseases. We narrowed it down to Barth Syndrome and then asked for the specific DNA test to confirm it. We were denied the test because the urine test was not conclusive for Barth Syndrome. The Barth Syndrome Foundation let us know the urine test is not always a good indicator so we kept fighting for a DNA test and finally received one. Later we received a letter which was an official apology from the genetics doctor at the hospital who had initially refused the DNA test to us. The Barth Syndrome Foundation to this day stands with us, educates us, comforts us and prepares us for the road ahead. At their bi-annual conference in Florida, which we have attended two so far, we have met so many other boys affected by this dreadful disease and that has brought us the most hope of all!

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?

2012

July 30, 2014

more

July 30, 2014

It is absolutely stunning what BSF manages to do in so many areas. Financing and coordinating scientific research, bringing patients with Barth syndrome together (online and face to face), supplying information for patients, families and physicians. And the bi-annual conferences bring all these topics together. No other patient group has been able to do any of this on such large skill, let alone for a rare disease.

Ways to make it better...

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

Absolutely nothing. They know very well what they are doing.

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?

2014

July 30, 2014

more

July 30, 2014

BSF is a like a second family for us. When our son was diagnosed they were right there to comfort us and answer any questions that we had about Barth Syndrome. It is a loving, helpful and supporting group of people that work together for our boys. They have made a huge difference in our life. BSF is hope for a cure!

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?

2014

September 9, 2013

more

September 9, 2013

Life before BSF can be characterized by one word, isolation. Isolation from informed doctors and researchers, from necessary services, from other affected boys and families, and from support of any nature.
Life since BSF can be characterized by one word, teamwork. Teamwork amongst doctors and
researchers, services providers, affected boys and their families, and support from all involved!
BSF is HOPE, for a treatment, a cure, for a better life for all our boys/young men!

Ways to make it better...

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

Include discussion and possibilities for the participation of, and services for the young adult population of BSF.

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?

A lot

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

September 6, 2013

more

September 6, 2013

BSF has made such a huge difference in our life when our grand-son was diagnosed with Barth Syndrome when he was 3 months old. We were overwhelmed with questions nobody could answer and we found in BSF a wonderful community of parents and experts offering knowledge, advice and support. The Internet Site is a remarkable source of information for many aspects of the disease and for every day life issues, the Listserv also provides quick and useful information through shared experiences. BSF is an excellent foundation which gives hope for a better future for the children and adults affected.

Ways to make it better...

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

it is perfect

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

Previous | 1 2 3...6 |
Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers