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 Barth Syndrome Foundation (BSF) is the only organization in the world focussed on this rare genetic disorder that affects mostly boys. This organization really serves as the center for information and activity on this life-threatening, complex disease. It has a world-class Scientific and Medical Advisory Board, offers research grants, organizes and sponsors top-notch international conferences every two years (with separate tracks for scientists and doctors and for families), provides important information and a supportive community for affected individuals and families, and offers a website and other materials for anyone who wants to learn more about this complicated, metabolic disease. Though a small organization, BSF is well-regarded among rare disease groups, since it is has been able to accomplish a great deal and continues to work diligently to do more. I know that it has made a difference to our family and to our son who has Barth syndrome. Not only is he no longer alone, but I believe that the scientific and medical advances that have been made with BSF's help have saved his life.
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.
When our son was diagnosed with Barth Syndrome in 2006, we felt lost and alone. With having a rare genetic disease that affects less than 200 males worldwide, it's hard for others to relate. Not even most close family and friends can truly relate. We decided to reach out to the Barth Syndrome Foundation, thinking that our son could help other boys like him by relating medical information. By reaching out, we found a WHOLE LOT more than just a place to share invaluable medical information. We found others who knew exactly what we were going through. Someone else finally understood our fears, hopes, struggles, and simple joys. We could share laughs, tears, and achievements with people who 'got' us. This group is full of knowledge and wisdom about things that no other group could share in the same way. This foundation is AWESOME!
Our son is affected by this disease and when he was diagnosed over 10 years ago, the Barth Syndrome Foundation dramatically changed his path of treatment and has been a life line for us. The medical advisory staff is incredible! The people involved and the families affected are extraordinary! The foundation provides instant access of help from other families as well as experts in the disease and can truly save lives by just one phone call, text, or email!
I first got in contact with the Barth Syndrome Foundation when my youngest son was born in May 2011. The support we received from the BSF was instantly overwhelming, and we felt blessed in knowing we were not on this terrifying journey alone. We live in Australia, and even though the BSF is based in USA, we felt confident that our questions and concerns in those early days could be addressed at any time of need. I truly appreciate and admire the BSF, and support its values and principles in helping families worldwide in the education about Barth Syndrome and it's complexities.
I became involved with the Barth Syndrome Foundation when I attended their first meeting in 2000. What a long way they have come in just 12 years! They provide substantial support for research aimed at understanding the condition, they provide amazing support to the affected and their families, they host biennial Family and Scientific conferences, there is a web site full of information, a listserv for families and another one for doctors and scientists, there are volunteer experts that can be consulted, families can exchange experiences and advice regarding this variable disease -- and there is the welcoming warmth, the belonging to a superfamily, the link across oceans and continents. In short, BSF is wonderful!
Those who have been touched in any way by this rare (but way underdiagnosed) disease understand how inportant this work and our support are.
BSF is so helpful to those who are struggling to find answers after receiving the shock of a diagnosis. Please help BSF to continue its wonderful work.
BSF was a lifeline to our family, we were no longer alone in this new chapter in our lives. I am not quite sure that such an organisation has came such a long way in such a short time ever before and that is testament to the strength of the people who are so passionate about helping all of the boys and young men affected by Barth Syndrome. We will always be grateful from the bottom of our hearts to each and every person that we have met along the way, thank you!
BSF has helped so much with so many issues. Being able to discuss with other parents issues that we face everyday and over time, makes dealing with this disease more manageable. Support, Information and a personal touch go a long way in helping to ease the stress you feel when you child is critically ill. The president has been there for me and my family for 13 years, the first of which were very critical, and now will be there for me and my family once again as we got through another critical medical issue with our son. I am so thankful for the Barth Syndrome Foundation and the list serve that keeps us together and keeps us strong for our children. A very fine group with a very great mission!
An excellent organisation providing unique information and support to affected individuals and their carers. They are a pioneering force in scientific research and strive constantly towards bettering the care of affected individuals via an ever evolving flow of information for healthcare professionals. As the mother of an affected boy I have received invaluable guidance and support from BSF.
I received a phone call from the Family Services Director of the BSF the same day my wife and I registered online with the foundation. Our 19 month-old son was officially diagnosed the day before, and we felt as if our lives (and his) were turned upside down. We were scared and unsure of the future. That call made a big difference, and since then, the BSF has continued to exceeded my expectations in every way possible. Its Board of Directors, it's employees and its members are all working together to help find a cure and to make life for those who deal with Barth Syndrome better. Their biennial Family and Medical Conference literally sets the standard for other such events. I can’t truthfully imagine my life now without the BSF’s involvement. We are huge fans.
I´m Miguel´s father. Miguel was( he ascended to the heaven) 5 years old; he was 4 when we diagnosed BS. From this moment we knows what´s can happened with BS thanks to your´s web. For us BSF was THE HOPE. We were not alone.
I was diagnosed Barth Syndrome about 15 years ago. BSF helped me to understand and cope with the problems i had to deal with. Because information is shared and the members are very supportive.
The Barth Syndrome Foundation has continually guided us since our son was first diagnosed at the age of 18 months. He is now 8 1/2 years old and doing very well - much because of the connections and supports that we have with this wonderful group of caring professionals, volunteers, and parents.
Barth Syndrome Foundation came into my life in July 2011 when my son was diagnosed. I was very scared and nervous at first not knowing what was ahead of us. We found out that Brayden had dilated cardiomypothy first along with some development delays. We thought that he was just progressing at his own rate although he was having a hard time gaining weight. He was falling below the weight curve everytime that we went to the doctor. We finally swiched doctor's to get another opinion and immediately she says to us "Has anyone ever told you that your son has a heart mumur". We have not heard that in the past so she referred us to AI DuPont Hospial for Children which is about two hours from our house to go to the cardiac center there. After doing testes, our cardioligists suggested that Brayden had Barth Syndrome so we did more test to confirm that and it was back true that he does. I have recently been tested and have found out that I am a carrier although I am unsure where it came from as my mother is not a carrier. The Barth Syndrome Foundation has been wonderful to us. I have met and gained friendships with people who are miles away but it is like we are long lost friends since we can relate so well. The information and support that you gain is amazing!
Our son is one of the older people surviving with Barth syndrome in the world. Until BSF was created literally no one knew about this disorder including the Docters treating my son, and of course our friends and family had no idea what we were facing either. We felt totally isolated and alone - adrift with no help, no understanding and terrified by the thought that Barth Syndrome would inevitably kill our son. BSF changed ALL of that for us and gave us hope, knowledge, comfort and a way to take some control over our son's disorder and his ongoing treatment. BSF has changed us from being isolated victims awating our fates to being warriers in the fight to find a cure and part of a cummunity that cares for itsdelf and makes the world asafer and better place for those affected. Barth syndrome is still a potentially deadly disorder, but so far, BSF has saved my son's life and given us all hope.
As a genetics professional, I can atest to the professionalism of this organization. Not only are they a wonderful source of support to patients and families, they are also responsible for encouraging research and excellent clinical care for families. Very few family support groups ever reach this level of excellence.
The Barth Syndrome Foundation has saved my life due to some clinical information that was shared through the organization. Beyond the clinical impact that the B.S.F. has had on my life, the foundation has also been a haven of understanding and social support as well as providing a built in group of friends. Thank you Barth Syndrome Foundation!
Having a sick baby can be so scary. Finding out that your 5 month old is in heart failure and has a rare disease is unbelievably scary. I am so thankful that we were connected to the Barth Syndrome Foundation. We have received such valuable information that has truly benefited the health of my son. It is also wonderful being able to communicate with folks that understand.