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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

137 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 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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1

Client Served

Rating: 5

From the moment our son was diagnosed with Barth Syndrome, BSF has been there for us. With every step of the way on this journey,we know we can lean on BSF for expertise, support and understanding. Someone once said to me that living with a child with Barth Syndrome is like living in a constant state of terror, waiting for something to happen every day. Barth Syndrome foundation makes this live easier to face every day. BSF gives us hope and tools to deal with it. You will never find a group of more dedicated parents and professionals.

1 Donna67

Client Served

Rating: 5

The Barth Syndrome Foundation has made such a difference to our lives. I feel we owe the health of our son to their hard work and determination. They offer so much help and support and for a rare disease with only approximately 200 boys affected world wide they have incredibly got to the stage of starting clinical trials in the very near future. They are amazing.

Previous Stories
3

Client Served

Rating: 5

The Barth Syndrome a Foundation provides wonderful
Support and immeasurable hope. It gives families from all over
the world a place to connect with each other and share the happiness and sadness
that comes with this often fatal and very rare disorder. The conference
put together biannually by BSF is one if the most incredible
experiences a boy with Barth and his family can have. For a non-profit that supports
a syndrome that is so very rare it is very mighty and in a short space of time
it has funded research so we now have hope that our boys will grow to be
Men.

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1

Client Served

Rating: 5

When our grandson passed away at age 6 months from what was later diagnosed as Barth Syndrome we were desperate for information about this extremely rare disease. Finding the Barth Syndrome Foundation (BSF) has been a Godsend. Not only were we personally contacted, but also invited to gatherings where we could speak with other families of boys suffering with Barth's. We now have a second grandson living with Barth Syndrome but because of the tireless efforts of the BSF to disseminate the latest information on treatments and to connect him with doctors and specialists worldwide, there is hope that he may grow up and live a productive life.
In spite of the fact that Barth Syndrome is so very rare the BSF has created opportunities to get to know and share experiences with other Barth boys, men and their families, and with researchers and specialists searching for a cure. The Biannual conference arranged by the BSF ensures that this happens and that as many families as possible may attend.
Barth Syndrome Foundation. Truly amazing. Truly family.

1

General Member of the Public

Rating: 5

My son was diagnosed with Barth syndrome in February of 2016. Barth Syndrome Foundation provided invaluable information to help navigate the struggles associated with this rare genetic disorder. We've met several families through BSF that share my son's diagnosis and have been able to learn even more. Barth Syndrome Foundation truly is, a great nonprofit...

1 Zaza K.

Professional with expertise in this field

Rating: 5

Barth Syndrome Foundation's commitment to advance an awareness and science behind this enigmatic killer makes BSF truly the Best nonprofit organization.

1

Advisor

Rating: 5

BSF is the Little Engine that Could! Barth Syndrome affects a very small number of families but the effects can be devastating. BSF serves affected families, supports clinical caregivers with up to date information for this complicated multi-system disorder and has funded almost $4M in competitively awarded research grants in the last 10 years. They run an incredibly well attended International Science, Medicine and Family Conference every two years, the next is coming up in July of this year. They are an invaluable resource for all three groups and a model organization for such a rare disorder!

1 wandalee

Client Served

Rating: 5

The Barth Syndrome Foundation has been a great support for our family since my grandson Jacob was diagnosed in 1998 at the age of 4 months. He had a heart transplant at the age of two and was on life support for 11 weeks. We had support from the Barth community. He had a second Transplant at the age of 16 and again we had the support of the community of
families going through some of the same things we did. It is a very worthy nonprofit.

Previous Stories
5

Client Served

Rating: 4

BSF is a great organization and these wonderful boys and their families deseve to have the support it offers. I am grateful for this organization and the support our family has received. My granson was diagnosed at four months and had a heart transplant at age two. We have received so much encouragement and support we could not get any place else. We have some tough days ahead and I know the encouragement we will receive will be appreciated and will help us get through.

1

General Member of the Public

Rating: 5

My brother,Bob was diagnosed with Barth Sydrome about 12 years ago.i reached out to Shelley Bowen,and she immediately returned my call.I don't remember everything but i did learn more about barth syndrome. My grandson was born in September 2008 and was diagnosed with Barth Sydrome in January of 2009.My grandson got the gift of life by having a heart transplant at the ageof 11 months.. We were told without a heart transplant byhis 1st Birthday, he may not live much past that. This was my witnees of a miracle, and I thank this organization for saving lives. Mary Klein

1

Client Served

Rating: 5

BSF is truly an amazing organization. They are a lifeline to families and individuals affected by Bart Syndrome. The wealth of knowledge and information, compassion and understanding, friendship and hope, that comes from being a part of an active, professional and caring foundation is beyond words. Barth Syndrome Foundation is simply phenomenal.

Previous Stories
4

Client Served

Rating: 5

When our son was diagnosed with Barth Syndrome, we were terrified. BSF not only helped us through some of the toughest times in our lives, it also showed us hope and support beyond anything imaginable. If you are one of the few affected families around the world with this rare disease, you feel alone and misunderstood by everyone. In most cases, not even the Drs that are working on saving your child's life know anything about Barth Syndrome. The info and expert advice, coupled with medical and scientific advisory board and all the researchers working on the cure are INVALUABLE!!! You will never meet another group of people as dedicated and unwavering as BSF!

1 Strawser111

Client Served

Rating: 5

This an absolute wonderful organization. There is so much love, understanding, and information. Every single person will do everything they can to help each other. It is a tight community with friendships that will last a life time.

Previous Stories
3

Client Served

Rating: 5

This organization has changed our lives. When my 15 year old son was diagnosed with Barth syndrome, we were overwhelmed and lost. Through finding the Barth Syndrome Foundation, we were able to find specialists and information as to how to treat this extremely rare illness. Within just one week my son was starting to feel better. It has helped our whole family understand the illness and to know that we are not alone. The physical and mental support is just priceless.

1

Client Served

Rating: 5

Barth syndrome Foundation is an amazing organization. BSF helps to fund research for a disease that is not readily known to the general public or to most medical professionals. It reaches out to the families of affected individuals and their families, it helps people to understand the disease and offers support to the families. They have set up a wonderful network for families, affected individuals,and professionals to support, inform and encourage each other. Every two years they organize a conference for the families, medical professionals, and researchers to come together and help each other in finding a cure for this rare disease. This group has helped ease the burden of the families affected

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

Board Member

Rating: 5

BSF creates a community for families that previously felt terribly alone with this rare disease. On top of that, with the active participation of some of the best physicians and researchers around the world, we have made discoveries for treatment and, we believe, eventually a cure that exceed even our own very high expectations of ourselves. The rigor of our research grant process has made this possible, along with our commitment to never give up.

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

Client Served

Rating: 5

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"...

2

Client Served

Rating: 5

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.

2 Plinfut

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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!

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!