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
We met BSF in the worst period of our life.
Really special people took care of our fear giving informations and hope.
Now we wish working as an affiliated organization will bring the same feeling in other Barth families in our country.
This gives meaning to pain.
So many lives saved by this great organization !!!
What We know about this syndrome has been learned because of this foundation
BSF has been part of our life since our grand-son was diagnosed about nine years ago and today we can't imagine how we and Jules' parents would have coped with the syndrome without the support of that wonderful foundation. This is the right place to get information, help, advice.....It also enables its members to share their experiences via the Listserv and this is extremely valuable when, as it is often the case with rare diseases, you don't manage to get answers to your questions anywhere. It is comforting to know that thanks to BSF and it's great team research is progressing, members can meet at their Conference, new cases are diagnosed thanks to their awareness campaigns... We are very grateful to everybody who makes all this possible every day.
BSF, an amazing organization: its excellent website and newsletter give us information about the medical and daily aspects of the disease and also about the progress of the research financed by the Foundation. Bringing people together via the Listserv or the conferences and allowing them to share their experiences and to get help and advice is also quite appreciated. Our Thanks to the dedicated team that makes BSF so invaluable for all affected individuals and their families.
Our son Wally has Barth Syndrome and without the Barth Foundation we would have not made it these past 8 months! The people are amazing and the work they do... to help find a cure for our boys... well there aren’t enough words. We love the Barth Foundation and our Barth Family!!
My brother (19) is affected with Barth syndrome, every 2 years we try to make the biannual conference if possible. The work they do and the support they provide is wonderful, the whole BSF community as a whole is like one big family and I couldn’t have hoped for anything more
Awesome group of people who are dedicated to new treatments and support for each and every patient and family. Small but mighty group! If I had to live this life without them it would be devastating
This foundation goes over and beyond for the many families affected by this tragic and horrific syndrome. From advice to messages of faith to keep our spirits up in the darkest hours, to the great medical and family conference. We are a small but mighty group. I wouldn't trade this foundation for ANY OTHER!
I have watched a dear friend lose two sons from this disease. Since then she has worked tirelessly to research it hoping to find a cure. This Foundation has great people that are so involved in trying to find a cure.
When we got the diagnosis for Caleb there was an overwhelming feeling of isolation. A feeling like nobody "got it", nobody knew what we were feeling and facing. We were overwhelmed and exhausted from all the research we were trying to do. Caleb was given a diagnosis that in a sense is invisible to most people. The world would not understand our challenges, they wouldn't feel our pain and joy from the smallest bit of progress. The weight of this diagnosis, the uncertainty of his future, it stole our breath and exhausted us. And then we found the Barth Syndrome Foundation. We found a community, a family that live in this same world we'd entered, that understood our pain and our fears, a family that could give us resources and real life experiences. Finding the foundation gave us comfort and hope and strength that we needed to continue on the journey alongside Caleb.
Opened my eyes to a syndrome I knew nothing about! This organization is very passionate and well organized! Thanks for all you do!
Wonderful organisation, fabulous source of information, great support for my son and our family. Always striving for the good of everyone through research, family services and support for our rare condition.
Amazing source of support, information and knowledge! BSF is always striving for the good of everyone and for that I can only thank them! It is amazing to see how BSF has helped and changed so many of our lives in a positive way. While it is always wonderful to look to the future I also think it is wonderful to look back and see how truly amazing this organisation has came in such a short time and that is testament to the beautiful souls who work tirelessly for the good of everyone....thank you from the bottom of my heart!!
Barth Syndrome Foundation has literally helped our family in so many ways, there is not enough Thank yous in this world to thank them enough for what they've done for my son and our family. They are always there for us in any way we need them.
The Barth Syndrome Foundation came into my life just this year when my son was born in March 2012. Having my first child was an amazing experience, but once he showed signs of heart failure it brought me to my low. I was happy but yet worried, especially when your two day old son goes to the NICU after he was born. Thank god we caught his heart issues and breathing issues right away, otherwise it would of been no good for us going home with him ourselves. It scares me everyday with this deadly disease my son has called, Barth Syndrome. As of now he is doing good, thanks to all of his numerous doctors and constant doctor visits. It takes alot of strength to stay strong and keeping strong not knowing what will happen each day with my son, but I do and that's all I can do. The Barth Syndrome Foundation has been a tremendous help with dealing with this disease. Everytime I am worried, I talk with other parents who are worried about the same thing with their son, it's nice because we all understand where eachother is coming from. It's nice we actually all became a family. I was told to take each day by day and that's what I am doing. My son is doing good now, but I don't know what the future holds, but I hope it holds a cure for these wonderful, amazing little boys who are soo strong and who are LOVED unconditionally.
As I’ve said before, an upstanding organization that is truly changing the lives of people affected by Barth Syndrome, both affected individuals and their families. Thankful for their hard work, compassion, and determination.
Honest, sincere, compassionate, and hopeful group of people. Would not wish the experience of having a loved one with Barth Syndrome, but so very thankful that we have this group in our lives!
BSF is both a family, and support group. A huge source of information, in a world, where there isn't much . We never feel alone. BSF gives us the strength and hope to live with Barth Syndrome. We are a small but MIGHTY group. The foundation is always in open arms for new families in need. We are #teambarth!
This organization has far exceeded any expectations in helping us cope with this horrible disease!
Ever since we found out 2 years ago that our son had this disease called Barth syndrome, this organization accepted us with open arms and has let us know everyday that we are not alone in this fight. This organization has done everything if not more to try and find a cure and is still searching. This organization needs more help in research to carry on this search for the cure. This disease is very rare and deadly, so please help this organization. They are worth every penny. Thank you,
The Barth Syndrome Foundation is a true example of how groups for rare diseases should be run. The way they bring patients, families, doctors and scientists together is unique and the amount of knowledge gathered in its mere 18 years of existence is mind blowing.
I am a scientist who has worked on Barth syndrome research since 2000 when BSF was started and it is amazing what they have accomplished since then. The biennial Conference brings together families, scientists and clinicians creating an opportunity for studies of the syndrome, opportunities for the families to meet and exchange experiences, opportunities for scientific collaborations. In between, one needs only to look at the BSF website to see all the services they offer to families and clinicians. All this effort is culminating in some currently ongoing clinical trials of therapies. I am headed to the 2018 Conference with great anticipation
The Barth Syndrome Foundation is a caring and committed, worldwide community that includes patients, families, scientists, physicians, and other healthcare professionals. Nothing like it that I've ever worked with.
My son has been living with Barth syndrome now for 20 years. We were told early in his life that he might not live past 4 years of age.
But because of The Barth Syndrome Foundation's work, efforts and research, our foundation is now offering clinical trails for new medications and we are really close to seeing gene therapy offered to potentially cure our boys and men. We never thought we would see this in our son's lifetime.
The Barth Syndrome Foundation (BSF) has given our family hope for a cure and has given us guidance on how to help our son live a wonderful life. We also have an entire new family of amazing people in our life that we have met through the Barth Syndrome Foundation. Getting to see most of these folks every 2 years at BSF conference helps us feel no longer alone in this fight against Barth Syndrome.
We will win this fight because of these Amazing Barth boys and Barth men who have participated in the research to gain knowledge about this disease. I know The Barth Syndrome Foundation will not give up until we win this fight.
Thank you BSF‼
Shelia Mann, parent & volunteer
Barth syndrome foundation, a multiple success story
Five years before the founding of Barth Syndrome foundation (BSF), I met Mrs. Shelley Bowen at the university children’s hospital in Amsterdam with her son, who was affected by Barth syndrome. Following the examination which confirmed the diagnosis we came to discuss the need of enhancing awareness of Barth syndrome by reaching out to affected families and their specialists. Upon coming home Mrs Bowen energetically started a network, ultimately spanning the U.S.A. and many countries, reaching out to affected families. But also, together with a small group of parents, she started to garner interest among specialists from various disciplines, as well as scientists. In the course of time this initiative grew to become one of the most successful endeavours in supporting patients and their families with a rare inherited disease. A website, acting as an international forum for parents and patients has become hugely popular, helping with information, support and advice. Simultaneously, efforts were made to promote clinical and basic research on Barth syndrome. The biannual meetings of which I was privileged to attend the first three have become very popular, attracting many affected families, medical specialists and scientists, all interested in Barth syndrome. All these activities have resulted in the creation of a unique community which encompasses patients and their families, clinical specialists, basic scientists, and organizational experts all dedicated to Barth syndrome, and communicating on one level without barriers. As a collateral result of this success funds could be attracted which enabled the scientific board of BSF to distribute annual grants supporting Barth syndrome related studies. Applications are screened by the members of the scientific board, and selected for funding by independent expert review and advice. As a direct effect of these activities Barth syndrome has become a regular feature in scientific journals. Also in the last years the focus of this research is now slowly moving from observational to therapeutic. Inspired by the success of BSF in the USA, similar societies focusing on Barth syndrome have now arisen in Canada, the U.K., France and Italy.
Peter G. Barth, Emeritus professor of congenital diseases of the nervous system, Emma Children’s Hospital, University of Amsterdam, the Netherlands.
the attached photo shows boys with Barth syndrome whom I was privileged to meet, during the first BSF meeting in Baltimore
I have worked with the Barth Syndrome Foundation for more than 15 years as a physician and a researcher. They are well organized and focused on education and advancing treatment for Barth Syndrome for families, scientists, physicians and health professionals. They have a terrific record of funding research, including clinical, basic science and translational research. They have a unique conference every 2 years that brings together families, scientists and clinicians. The foundation continues to grow and is a model foundation for rare disease advocacy.