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Barth Syndrome Foundation Inc

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Heart & Circulatory System Diseases & Disorders Research, Pediatrics, Philanthropy, Philanthropy, Voluntarism & Grantmaking Foundations

Mission: The Barth Syndrome Foundation (BSF) is dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome (BTHS).

Results: Our efforts have provided educational resources to transform families from powerless by-standers to empowered advocates.

Geographic areas served: International

Programs: BSF sponsors a competitive research grant program to facilitate advances in Barth syndrome (BTHS) understanding and to encourage the discovery of new treatments.  We are interested in providing “seed grant funding” to young investigators as well as attracting experienced investigators new to the field of BTHS basic science or clinical research. We anticipate that these funds will be used for the testing of initial hypotheses and the collection of preliminary data leading to successful long-term funding by the National Institutes of Health (NIH) and other major granting institutions around the world.

Community Stories

13 Stories from Volunteers, Donors & Supporters

7 Florence6

Client Served

Rating: 5

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

1 Grant H.

Volunteer

Rating: 5

This is a wonderful organization that supports family members with Barth Syndrome and focusses on addressing the cause and cure of the disease.

1 Susan Hone

Board Member

Rating: 5

After losing one son to Barth syndrome I was determined not to lose another. Finding the three women who were looking for others whose children had Barth syndrome was one of the luckiest days of my life. They arranged a meeting and people from all over the world came. Barth Syndrome Foundation was formed. Seventeen years later we are doing clinical trials on potential drug therapies. Amazing! My son and many others will have a better future because of this foundation. I am honured to be a part of the Board of Barth Syndrome Foundation of Canada, an affiliate of Barth Syndrome.

Previous Stories
1

Board Member

Rating: 5

I would be totally lost without the advice, support and knowledge of this group. In the 16 years since it was decided to establish the foundation we are already heading into clinical trials to treat this horrible syndrome. Thank you to everyone involved

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1

Volunteer

Rating: 5

This group has been incredibly welcoming to me as a volunteer. They are passionate, organized and focused. I have never worked with a group this amazing.

1 Kristi P.

Volunteer

Rating: 5

Being the parent of a child with a rare disease of less than 200 known affected males makes for a very isolating and lonely scenario... Being told by countless doctors that they have never heard of the condition, even more so.
But thanks to Barth Syndrome Foundation, they close that gap.
They provide endless information and support. They connect the families which are scattered over the world.
The information provided to families and physicians by BSF is invaluable and at times lifesaving. And now, thanks to BSF, we are even on the verge of a possible breakthrough treatment! I cannot say enough about BSF, my extended family. In a world where my son is extraordinary, this is the one place to come where he can feel ordinary.

Previous Stories
1

General Member of the Public

Rating: 5

We will always be so grateful for Barth Syndrome Foundation.
More than seven years ago, our journey began in a way that the majority of this world will be lucky enough to never experience.
The future was bleak and we felt very alone.
Our newborn was in heart failure and given a very poor prognosis. He was placed under hospice care at 45 days old until the age of 15 months when he overcame.
Along the way, Christopher has defeated many odds and obstacles, including hospice, a stroke and a current medicine regimen of thirty two doses a day and two injections a week.
Throughout it all, he remains positive and happy. Our faith has carried us through many dark times.
And Because of Barth Syndrome Foundation, we have been given HOPE, a support system and life saving information.
We no longer feel so alone being able to interact with other families with similar daily challenges.
Our BSF family is the best part of this horrific diagnosis.
We are blessed to be given HOPE through seeing the older boys and men grow stronger and be productive members of society and even start families of their own!
Together, the efforts of Barth Syndrome Foundation, the supporters and scientists who are tirelessly dedicated to our guys, we have tangible HOPE of several possible treatments for which there are currently none.
We have HOPE for a cure someday.
Because of Barth Syndrome Foundation, a once 100% fatal diagnosis now before the age if three has HOPE for a prolonged survival rate.
We feel that Barth Syndrome Foundation has played a role in the survival of our own son.
But there's still so much to be done.
We are still suffering the loss of some incredibly precious men and boys.
We have HOPE for a future in which Barth Syndrome never cause suffering or loss of life again.
We have HOPE that each boy will receive a diagnosis that will undoubtedly help their chances of survival and quality of life.
We HOPE that you will join us this giving Tuesday, December 1, 2015 in supporting Barth Syndrome Foundation. What will YOU give?
www.barthsyndrome.org

Review from #MyGivingStory

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2

Volunteer

Rating: 5

We lost our son Alasdair Leonard Gray to Barth Syndrome last year. We had never heard of it. Since then we have been active in fundraising for this wonderful foundation ("trust" in the UK).
Alasdair's dad x

3

Volunteer

Rating: 5

BSF is an amazing foundation. They are an invaluable resource to those of us with families affected by Barth syndrome.

3

Volunteer

Rating: 5

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!

2

Volunteer

Rating: 5

I have been involved in a number of volunteer organizations and have to say the BSF group is quite outstanding. Started from a small set of dedicated volunteers, this group went from being concerned parents to a highly professional organization that is driving research and results for the affected population around the world. Everyone involved cares deeply about the families and the affected boys and men, and it shows in everything they do. As a parent, I know I always have the backing of the organization and if my affected son ever gets into trouble, he will be able to get help from the world's experts on this condition. As a donor I know my funds are well spent and leveraged for maximal effect. As a volunteer I know every hour I can spend makes a difference. I have learned and grown with this organization, both as a volunteer and as a family member of an affected individual. I can't thank them enough.

5

Volunteer

Rating: 5

Those who have been touched in any way by this rare (but way underdiagnosed) disease understand how inportant this work and our support are.

8

Volunteer

Rating: 5

I met Lindsay Groff through a mutual friend and she introduced me to the Barth Syndrome Foundation (BSF). I didn't know much about the foundation but she really inspired me to want to know more. I explored on the website and found out more about the disease. When Lindsay asked me if I was interested in volunteering to help out the organization I jumped at the opportunity. I think the foundation is great. There aren't a lot of resources out there for this particular disease and I think the BSF is making huge strides to help in the fight. This foundation may be small but they have a huge voice. I'm very proud to say I could help out the BSF.

5 Ashley31

Volunteer

Rating: 5

Barth Syndome Foundation is a FAMILY of HOPE & LOVE that is centered around boys affected with Barth. This family consists of the boys, their parents, grandparents, aunts, uncles, friends, doctors, researchers, volunteers and more. I became involved because my husband does research on Barth. I was welcomed immediately & felt a tremendous desire to help. BSF focuses on finding a cure while loving these boys & their families through the process- connecting real people with resources, friendships & lifeline.