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 is our savior!! Whenever we need to compare notes with other parents of Barth Syndrome boys or check on the latest research being done to eventually cure the disease we turn to the foundation and it's many active members and listserve for support. They have been crucial in helping us cope and our son to thrive with Barth Syndrome. My son Abram would not be with us today had we not found out about the Barth Syndrome Foundation.
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.
When BSF was founded in 2000, when so little was known or understood about Barth Syndrome, I never expected that it would lead to so much progress: in less than 20 years, BSF has brought together a large number of researchers that collaborate; lifespan has increased dramatically with better understanding of the disease mechanisms; BSF-funded research has led to 2 clinical trials seeking to alleviate the disease; BSF offers excellent educational materials for families; BSF offers tremendous support to affected families thru their Family Services section. The future looks very hopeful.
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
Nick was diagnosed @ 4 yrs old. Since then we’ve had some struggles but thank god he’s over came them. We take life one day at a time
Our son was diagnosed before his first year with a life threatening condition, Barth Syndrome. Barth Syndrome Foundation has been a part of making almost all the published and online information that is available about Barth. Without BSF, we wouldn’t have known how to care for our son or give him his best chance at a long full life. I tear up thinking how much they’ve done for us. Thank you BSF!
BSF is a lifeline for those with this rare disease, a global center of knowledge about this disorder, and catalyst of advancement for those working to find treatments for it.
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.
Life-saving organization! Our son is affected, and BSF has been there from the beginning. Disseminating information to public, healthcare professionals and always seeking out newly diagnosed families. Once you are a member odf a rare disease club, you become an expert, and best advocate for your child. BSF is there to help you do that!
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.
Because of the Foundation I learned about my sons illness I will forever be grateful to them for there support and information. They are our family and we love them very much.
I have been involved with BSF since it's beginning. I don't know what I would do without it. So much support and knowledge from a great group of parents, doctors, therapists, scientists and many other people. So many people working together to help people with Barth syndrome find a treatment or cure.
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.
The Barth Syndrome Foundation is small but mighty. They provide amazing family support as well as provided resources for families and medical professionals. They have spent funds wisely and have made incredible inroads in research and have provided us with hope. 20 years ago I had very little hope for my son but now I am incredibly hopeful of treatment and even a cure.
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.
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!