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
The community is tight-knit, knowledgeable, and inclusive. The Foundation includes not only the patients and their families but also scientists, physicians, and others taking care of Barth patients, all working together - and I mean really together - to cure Barth Syndrome. I believe the single "jewel" that epitomizes this Foundation is the biennial international conference they organize, which brings together patients, their families, and scientists from around the world to make headway into this devastating disease.
The Barth Syndrome Foundation is an incredible organization whose professional members - scientists, physicians, psychologists, nutritionists, physical therapists and others - freely interact with patients and their families, all focused on finding effective treatments for this rare disease. Though small, the Foundation manages to fund research (several projects every year!), host an biennial scientific and family conference that draws an international audience, and provide a vast support network for patients and families. The connectedness felt among all in the Foundation - from the sickest infants to the young men who have survived all challenges, to their parents and families, to those working towards a cure - is unlike anything I've witnessed in any other professional organization.
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
I do not know where I would be without the foundation. They have helped me numerous times with advice about my son that has made a difference in his care. The foundation is actively looking for a treatment or cure for Barth syndrome and I am confident they will find one.
Connecting with the Barth Syndrome Foundation changed our lives.
We are parents of two boys. Max (now 7) and Brady (now 6). Before joining the BSF community, we had noticed that Max had low muscle tone and after a few years of research finally got a Barth diagnosis for him. Brady on the other hand, showed none of the symptoms.
Once the diagnosis achieved, we still had little input as to what to do to help Max. We saw many doctors, all very nice and keen to help. But at the end of the day, a lot of the work went towards monitoring, and little of it towards helping/improving.
After connecting with BFS, we felt like we had finally met 'our people'! Parents sharing stories and observations. Doctors providing recommendations that we could pass along to Max's doctors. Friends caring for each others.
We now finally feel that we can help our Max. He is a wonderful 7 year old, full of curiosity and wit. It's a great feeling and we are convinced that through the persistence of BSF and the network with our doctors, a cure will be found.
I am 100% certain my son would not be where he is today without the Barth Syndrome Foundation. They have a listserve for parents of affected boys to communicate globally about nuances of the disease. They have two DNA registries which are helping researchers work towards a cure. They have a bi-annual conference that is both for families and scientists to meet and share information/data about the disease. They support and recognize all the members who do fundraisers to help find a cure for our boys. It is truly a world class foundation and I am so proud to be a part of it.
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.
I've been involved with BSF for about 10 years now and I can't speak highly enough of this great organization. For a small group focused on a rare genetic condition, it's amazing to see the impact they have. The Foundation has raised millions of dollars for research into Barth syndrome, has raised awareness among the medical community and is always there for parents in need.
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".
The people with the foundation go far beyond what is asked. Not only do they do their jobs, they become family. They love & care about each one of the families affected by this disease.
Cannot thank them enough!!!
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.
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?
Review from #MyGivingStory
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.
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.
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
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.