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
I joined the BSF after my son was diagnosed in February, 2012. The outpouring of support we received was tremendous. Since joining we have also learned so much more about the disease through the foundation not to mention the amount of research they are funding to try and find better treatments for our boys. The foundation is literally a lifesaver.
Barth syndrome foundation came into my life when my brother was diagnosed in 2010. BSF not only targets support for the affected boys, but also the siblings. It's really nice to be able to connect with others who are going through similar situations. They have treated us like family from day one. The members of BSF are more than willing to help with support and information to those in need.
I met Lindsay Groff through a mutual friend and she introduced me to the Barth Syndrome Foundation (BSF). I didn't know much about the foundation but she really inspired me to want to know more. I explored on the website and found out more about the disease. When Lindsay asked me if I was interested in volunteering to help out the organization I jumped at the opportunity. I think the foundation is great. There aren't a lot of resources out there for this particular disease and I think the BSF is making huge strides to help in the fight. This foundation may be small but they have a huge voice. I'm very proud to say I could help out the BSF.
A good friend's family has been impacted by Barth's Syndrome for 30 years. At the time their son was diagnosed there was little scientific research, knowledge, or emotional support for families. Since the creation of BSF these problems have been erased at an amazingly quick pace. Now there is research, efficient dissemination of information, and emotional support for families around the globe. I've been impressed with the difference BSF has made in a relatively short amount of time. Now families have hope, both on the medical and emotional fronts.
When my youngest brother was just a baby, he was life-threateningly ill and nobody was really sure why or what he had. It was years before we got an actual diagnosis of Barth Syndrome, and without a diagnosis it was both scary and lonely. When we found the Barth Syndrome Foundation, it provided a special kind of hope, and an incredibly invaluable support network for people who thought their family was alone in the world with their child's illness. Bringing the families affected by this extremely rare disease together to pool resources and experience has helped both families and their doctors know better what to try, what has already been tried, what warning signs to look for, and has given hope for finding a cure. Their research has been invaluable, and the work done at educating physicians and providing them with up-to-date information on the research helps families all over the world access better treatment and more hope of survival than they might otherwise have. My brother is doing very well considering the severity of his illness, and, most importantly of all, I still have him with me - and the value of that gift is immeasurable.
A very special friend of mine has Barth Syndrome. I have learned so much about this Foundation; from the very beginning to the amazing achievements they have made. The Foundation continues to grow trying to find answers for families. The families connected with the Barth Syndrome Foundation are given encouragement and hope knowing that they are not alone in a difficult journey.
My husband only recently was diagnosed with Barth Syndrome. For years, we had no idea where his problems really came from and now we have answers. The Barth Syndrome Foundation has helped us in so many ways from encouragement to helping us find the answers we need.
I have been involved with the Barth Syndrome Foundation since its first being in 2000 in Baltimore I IWith BSF we found another family, our BARTH FAMILY. With BSF i'm not lose, I found hope and help. I have had two sons with Barth syndrome (one whom did not have the opportunity of being diagnosed and passed away in 1991. My second son, Pedro, now 19, is doing well, Portugal
My family has seen how the ideas of a few people became a research and support model that other groups admire and utilize. We feel that every dollar donated brings a cure closer, and that in the meantime, families receive the information and support that sustains them. A dear family friend has Barth Syndrome, and we're so proud of this young man (John W.) for taking a leadership role in the organization. He's an inspiration to everyone that knows him, and the main reason why we donate.
Barth Syndome Foundation is a FAMILY of HOPE & LOVE that is centered around boys affected with Barth. This family consists of the boys, their parents, grandparents, aunts, uncles, friends, doctors, researchers, volunteers and more. I became involved because my husband does research on Barth. I was welcomed immediately & felt a tremendous desire to help. BSF focuses on finding a cure while loving these boys & their families through the process- connecting real people with resources, friendships & lifeline.
I have been involved with the Barth Syndrome Foundation since its first being in 2000 in Baltimore, MD. I immediately made a connection with the families that I met during this meeting. At first I volunteered doing whatever it was I could do to help raise awareness and funds. I then was invited to join the Board where I served for one term. I now am an employee of the Foundation, and truly believe that I have found my calling. I have had two sons with Barth syndrome (one whom did not have the opportunity of being diagnosed and passed away in 1989. My third son, Derek, now 19, is doing well, and followed at Boston Childrens. I have found a family around the world who TRULY UNDERSTANDS what it means to have a child with this disease.
I'm a Board Member, but also have a son with Barth syndrome. For many years we knew no one else who was affected with Barth syndrome. My family and I were completely alone. Now, we have families from all over the world in the Barth syndrome community. There really are no words to describe the impact BSF has had on our lives--in many ways. We now have an extended family who understand completely what it's like to live with a such a rare, serious and potentially life-threatening disorder. BSF is small, but proactive, and we never give up--we are working hard to find answers about this disorder by funding research, as well as providing family services, raising awareness, holding an amazing conference every two years that combines families, reserachers, and physicians, and more. We are very grateful to have BSF in our lives!
I have been involved with the Barth Syndrome Foundation from the very beginning, watching it grow from a small network of concerned families, scientists and physicians to a non-profit organization with chapters around the world. I grew up with two younger brothers affected by Barth Syndrome and for a long time, we felt very isolated because we knew of no one else affected with this disorder. Since the Barth Syndrome Foundation came into being that isolation has gone away. We have this wonderful community where people can ask questions and share their experiences through the e-mail listservs or social media. We know so much more now about Barth Syndrome than we did when my brothers were little, or even ten years ago. We cheer on our boys when they've reached important milestones and accomplishments, and we embrace and comfort each other when one of our guys loses his fight with Barth Syndrome. There is support available for everyone touched by this disorder, from the diagnosed individuals to the parents and grandparents, from the siblings like myself to the scientists researching the disorder and physicians providing care for the individuals. It's incredible to be a part of this group, this "family."
I have been working with the Barth Syndrome Foundation for several years. Not only is it inspirational to see the families working together for support and of course, their common goal, but the dedication of the Management and the Board in all facets of running the organization is outstanding. Everyone works together tirelessly to achieve their mission.
The Barth Syndrome Foundation (BSF) is a dynamic organization that has created a community for families who have a child diagnosed with BTHS, a rare genetic disorder. Because BTHS is so rare, it is important for BFS to be the voice for families in research, education and general awareness, that will one day lead to a better understanding of the disorder and perhaps a cure.
When we learned that our son had Barth syndrome, we were utterly terrified. The little amount of research we had done showed us just how rare the disease is and we were afraid we would be able to find very little support in caring for him. Almost none of his doctors had ever heard of it! But then we discovered the Barth Syndrome Foundation and their community listerv. We were encouraged to attend the upcoming bi-annual conference for both families and medical professionals. What we discovered was an organization centered around the families of affected individuals. We were welcomed with open arms by complete strangers. Being able to meet and talk one-on-one with the leading doctors and researchers of Barth syndrome was helpful beyond measure. The Foundation is exceptionally passionate about getting the word out about Barth syndrome and making sure that the community is supported not only by its members but also by the doctors working hard to find a cure.
Before the Foundation I had never met anyone else with Barth Syndrome. This group Welcomed me in with open arms, sharing information and advice. Words cannot describe how grateful I am for all this group has given me.
I chose to donate to the Barth Syndrome Foundation after reading one of their newsletters. I felt compelled to give to this incredible organization when I read the stories about these wonderful families. I was actually moved to tears, reading about the challenges and triumphs that these boys and young men experience. I know that my dollar will go far with this small, dedicated group! I look forward to reading the next issue of the newsletter to learn more. Thanks for all that you do to help those affected by this rare disorder.