Barth Syndrome Foundation Inc

An incredible organization doing exceptional work!

Wonderful organization with immense heart that drives for tangible results for their community!

The Barth Syndrome Foundation has been a lifeline of information, support, and community for our family for over 10 years. The services provided are invaluable, and the research and advocacy life-saving. So much progress has been made for this ultra-rare disease and none of it would have been possible without BSF. Best of the best!

This is such a wonderful foundation doing amazing work!

The Barth Syndrome Foundation is a lifeline to our family. We are so fortunate to have BSF beside us through our Barth Syndrome journey.

I’m proud to support the Barth Syndrome Foundation and its mission. It’s inspiring to see how my donations have contributed directly to advancing research and advocacy efforts, particularly toward the FDA review of elamipretide. This organization's dedication to improving the lives of individuals with this disease is commendable, and I’m pleased to be part of such meaningful progress!

Receiving a diagnosis of an ultra-rare, potentially life-threatening genetic disorder can feel pretty bleak. The Barth Syndrome Foundation is an invaluable resource for individuals living with Barth syndrome and their families.

Barth Syndrome is a little known disease that affects boys almost exclusively. When I first learned of Barth boys weren’t usually living past their teens. Now through research and better understanding their lives can be improved in quality and longevity. The foundation is there for these boys and their families. I am proud to be a donor to this worthy cause.

A wonderful foundation doing great things to help people who suffer from Barth Syndrome cope and develop treatments.

After my wife & I started volunteering about 5 years ago, we have grown to appreciate how much these families do for each other. They come from all over the globe every two years to learn and help each other. We volunteer and have watched as these boys how grown to become wonderful young men. BARTH means so much to me and I look forward to doing more for BARTH every year.

I love the BSF where such a closenet community where everyone is treated like family!

BSF offers invaluable programs for families who are grappling with this condition.

Barth Syndrome foundation is a wonderful organization dedicated to those affected by Barth Syndrome. It has fostered a community of hope and caring as well as a place to share knowledge about this Syndrome.

BSF has lead the way in advancing research and advocating for treatments for Barth Syndrome. BSF Funds multiple peer reviewed research grants each year to learn more about this disorder. BSF is working with the FDA regarding the challenges of drug approval in ultra rare disorders.

I have only been involved with the Barth Syndrome Foundation for approximately 5 years, however, this organization has completely changed my life. I was diagnosed with Barth Syndrome in my early 30s. Ever since I was introduced to this organization, I have seen the profound impact it has had on providing educational information on the disease, connecting me with other diagnosed individuals and allowing access to the many providers around the country who specialize in treating this ultra-rare disease. The Barth Syndrome Foundation truly cares about the affected individuals it serves in working over 10 years in drug development and outreach through sending us to Washington DC for Rare Disease Week and Maryland for the FDA Advisory Committee meeting and advocating for fair review processes in ultra-rare disease drug development.

This organization does an amazing job of maximizing donations and other resources to provide for the needs of this community. Their mission and values are consistant and present in every decision they make.

Barth Syndrome Foundation is a wonderful organisation that has helped my son and our family's journey throughout. It empowers parents and carers to be great advocates for our loved one and also helps my son navigate his health condition for him to live his best life. It provides amazing support, research, in depth and up close and personal connections to the doctors and scientists that are working tirelessly for our loved ones and I don't know where we would be without such a fantastic resource. No one ever wants for their child/loved one to have Barth Syndrome diagnosed, however if Barth is in your life then you are blessed to have such a dynamic, passionate organisation standing shoulder to shoulder with you.

BSF is the place to go for information about Barth syndrome. It is the global centre of knowledge about the disorder for both families and doctors. It makes a huge difference in the lives of those affected by the disorder. Not only is there a wealth of information at your fingertips, but by being a part of the Foundation there is compassion, understanding and hope so necessary to a good life which cannot be found anywhere else.

This organization is so beneficial to anyone affected by Barth syndrome, not only individuals but families as well. A wealth of information at your fingertips and someone who will answer your questions anytime you ask. I have met so many lifelong friends!

As a Barth Person i can tell from experience that they are a tremendous support for all Barth Persons and their families.
Not only do they help with practical information they also help you with mental issues .

And most important they do a lot of efforts to aim for a treatment and maybe in future a cure for Barth Syndrome.

While I don’t have a child with Barth Syndrome, I’m very aware of this orphan disease and greatly admire the hard-working dedicated team working toward better treatments and eventual cure.

I have been involved with the Barth Syndrome Foundation through relationships with those stricken and their families. The work and dedication put forth by this foundation is the most touching and heartfelt I have ever seen. There has been heartbreak due to those we have lost and hope by the great strides made. God bless these families.

Barth Syndrome Foundation has been there for us from the first week of our son's diagnosis. They have provided us with so much information concerning this illness. They have guided us and held our hands through every step. We have a community where we can ask questions, pray for one another, and cry together. We feel like a family! A wonderful extended family, who cheers for us and we cheer for them!

BSF is not just a non profit, but a family. It’s not even just a family to families of those with Barth, but to the volunteers as well. I will forever be thankful for the opportunities I’ve had to volunteer, as well as the friends and family I’ve made.

This foundation has helped us so much. Having the support and information when you go through a rare disease diagnose is so important. We are so gratefull.

The BSF story is one of the most beautiful missions I've encountered in this life. I'm fortuned not to be affected directly, but I have been exposed to the love and dedication the organization has to help families to find hope with such a rare condition. I have witnessed the painful losses to the families but I'm also a witness of the commitment the organization has to keep bringing love and a sense of community to the affected families. I wish continuous success in their mission and will continue to support their efforts to bring hope and love to this beautiful community.

I am a supporter of the Barth Syndrome Foundation for many years. My college roommate is a founder of this organization, and she and her husband have made this endeavor their lives' work. I believe that research done to address this disease will not only further the goal of curing Barth Syndrome but will also lead to solutions for curing other rare diseases. Their passion and commitment deserves the attention of funders and medical researchers.

The Barth Syndrome Foundation has meant so much for our family. It gives information, help, support .....and has created links all around the world between the affected individuals who can share their experiences and advice, which is very important when you are affected by such a rare disease. We are really grateful to its wonderful staff.

Although having a loved one suffer from a rare disease is one of the hardest things I have ever experienced, BSF has made life so much better than it otherwise would be. The foundation has provided space to build community and learn from experts that makes no family know what it is to be alone. I truly do not know where I would be without my Barth family.

BSF has been a wonderful family for us, one that understood our journey when our own family often did not. They have helped our son thrive under difficult circumstances and helped us endure the unthinkable. They are sponsoring research and development of treatments with real promise for those struggling with Barth syndrome and offer real hope to the entire community. We are so grateful to BSF and all those who make it possible.

My son was diagnosed with Barth Syndrome in December 2021 and the Barth Syndrome Foundation has been phenomenal as a resource as we continue our medical journey. We use it constantly to look up recent information on the condition and how we can better assist our son with the issues he may face. It was the first website I came to when I was needing to know everything about Barth Syndrome and will continue to be what we look to when we need our questions answered. We are so thankful for the Barth Syndrome Foundation!

The Barth Syndrome Foundation was the first website we visited after receiving our son's diagnosis when he was 18 months old. This organization has been a lifesaver. Through BSF, we have been connected to exports on our son, Connor's, extremely rare condition. We have also met dozens of amazing families faced with our same trials and tribulations. I'm not sure where we would be without BSF!

Advocacy, community support, research... All arising from this incredible and incredibly committed community of patients, families, friends, clinicians, and researchers.

Barth Syndrome Foundation is one of the most educational organizations that I have ever experienced. Things that benefitted me the most are the research updates and the various accessible seminars on the website. It is a very inclusive organization as it not only united the families but also united the researchers together. It has been a very pleasant time for me to work with Barth Syndrome Foundation, and I believe that it is making an enormous difference for everyone in need.

Barth Syndrome Foundation dedicates itself to promoting Barth Syndrome and cardiolipin research. As a researcher, I always find their website to be very useful as it contains the most updated news in the current research area. It also contains seminar recordings that are publicly accessible, making it very inclusive in its accessibility. From my experience of working with the staff in the foundation, they are all very friendly and are always trying their best to help me when I was reaching out to them. Overall, it is an excellent organization that can benefit both the patients, families, and scientists.

Love ������ always there any time any day they’re needed! Thank you ������

Barth Syndrome Foundation works tirelessly towards giving practical help to our sons increasingly debilitating disease. We are provided webinars with specialists and informed about medications and therapies and their international network provides us with great 24/7 help and advice. Barth Syndrome Foundations help and services gets better year after year and is invaluable to us

My family and I have come to the place where our life’s passion is totally aligned with that of BSF. We are an affected family in this super-rare disorder and BSF offers us real hope for treatments and even a cure for Barth syndrome… and in the meantime creates and nourishes a warm supportive community that helps us all make life better for our kids and ourselves. Thank you BSF! We are supporters for life!

The Barth Syndrome Foundation is an amazing organization filled with members who have a wealth of knowledge about this very rare disease. Collectively they are changing lives for those diagnosed with Barth Syndrome. The support for their members is simply incredible.

We have been involved with the Foundation since the beginning. Prior to the Barth Syndrome Foundation we had never met another person with the disorder--life before and after is like night and day. We went from stumbling around in the dark, not even sure what we were looking for to having people offer support, knowledge, information and most of all hope for the future. It is an honour to be part of such a caring and thoughtful group, that I know will never give up until a solution is found.

Ever since our grand-son was diagnosed with Barth Syndrome more than 12 years ago the Barth Syndrome Foundation has really helped us to face the challenges of this disease.
It was like a beacon in the dark when we didn't know anything about this rare disease in the early days.
The Foundation not only offers knowledge, information and support, but thanks to its dedicated team of doctors, researchers, workers, volunteers....it can also give hope for a better future to the affected individuals and their families.
We also appreciate being able to share experiences with families everywhere, it is always a source of useful advice.
We are grateful.
Madeleine Lallemand Egueur, Belgium

This organization works diligently to help each and every Barth Syndrome patient and their families. Wonderful, caring organization.

Our family has been a part of BSF from the beginning. My affected son has been profoundly impacted by the benefits of our involvement, from new information to make his life better, to friends and supporters the world over. BSF is also a family affair, each of us utilizing our gifts to do our part, from fundraising, family services and the Board of Directors to name a few!
All our lives have been not only supported, but enriched.

I participate in research and patient care of patients with Barth Syndrome and would be unable to do this work without the incredible work and support of the Barth Syndrome Foundation. It is a warm and genuine community and I am grateful to collaborate with them.

BSF is attentive to every individual with Barth syndrome while also driving a very impressive strategic research agenda!

A truly inclusive, informed and dedicated organization who have been our lifeline since our precious son was diagnosed. In a world where your child is only one of fewer than 300, life can be isolating and terrifying. BSF has galvanized the international community of affected families, researchers, medical professionals, volunteers and donors through the perfect understanding that it is only through our collective efforts and resolve that we will ultimately triumph over this extremely rare and devastating condition.

Definitely a 5 -star PLUS non profit!

It has been amazing to find support and answers. They have given us so many answers and support in this unknown sindrome

The BSF is highly supportive of young investigators in the field and this has undoubtedly led to the furthering of our understanding of BTHS and therapeutic development for this rare disease. The conferences are extremely well planned and enable crucial interactions between patients, families, clinicians, and researchers. - Christina Pacak

I've been involved with the BSF since its inception, 20 years ago. I've been a researcher and still am a volunteer -- I would no longer be involved if they were not first rate: in fact, they have exceeded all expectations in such a short time. This is because of a clearly defined sense of mission of the leaders. There is a mission of achieving therapies and perhaps even a cure, done purposely and scientifically, no shortcuts, no snake oil. In addition, there have been excellent additions to BSF's offerings in the form of Family Services and support. Families with Barth syndrome children find hope and love.

BSF is a wonderful supportive and knowledgeable patient organization run by excellent and enthusiastic parents and patients.
The organization have spurred scientists to dedicate their work to elucidate the nature of the disease and come with useful thoughts about potential cures.
Care in the broadest meaning of the word and science are brought together in a translational approach to improve life by means of BSF's efforts

When our son was diagnosed with Barth Syndrome, which is very rare, we did not know where to turn to. Within 24 hours we received a call from members of the Barth Syndrome Foundation and they have use Information of the disease as well as questions we should be asking to get better healthcare for our son. We were able to meet other families with children that also have Barth Syndrome. It gives us a community that understands not only the struggles of our children but also the struggles of the parents that take care of our amazing kids. BSF also is leading the way in finding new medicines and such that will hopefully help children like mine live a more normal life in the future. While this community is small it has been an amazing resource for many and will continue to do amazing things in the future.

BSF Inc. is a great non-profit organization combined with patients and their families, clinicians and scientific researchers, and volunteers, offering warm and family-like but most efficient work from beginning to nowadays.

Every two years BSF brings doctors, researchers, and families together in an effort to conquer this terrible disease. They have a strong presence on Facebook and continually support individual families with their daily challenges. BSF shows their community compassion, strength, and hope through knowledge and endurance.

Je suis le papa d’Antoine atteint du syndrome de barth.

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.

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.

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!

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.

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.

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.

,

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

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.

Opened my eyes to a syndrome I knew nothing about! This organization is very passionate and well organized! Thanks for all you do!

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.

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!

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,
Sienkos

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.

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.

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.

This foundation helps so many people and brings them together.

Barth syndrome has affected many members of my family. The Barth Sydrome Foundation is a great resource full of knowledge, compassion and understanding.

They have given us knowledge about what Barth syndrome is. They have brought the family closer together. If is amazing how far the organization has come.

Amazing support, help and hope for those affected!

This is a wonderful organization that supports family members with Barth Syndrome and focusses on addressing the cause and cure of the disease.

Barth Syndrom Foundation really matters in our lives. Clear and useful information, advice, shared expériences, a conference involving top researchers and families..... All this means an enormous support and gives us hope for a treatment. Jules et Madeleine Lallemand

My son has a rare disease called Barth Syndrome. The Barth Syndrome Foundation reached out to us after his diagnosis to offer help, guidance and support. Since the time that we have been with the foundation, it has allowed us to meet and talk with other families that are dealing with the same issues. It has also given us hope, support and guidance with our son. It has been great for our son to meet other boys that are affected with the same disease.

Barth Syndrome Foundation is a first-class organization all the way. Everything they do is mission-driven with the goal of finding treatments and a cure for Barth syndrome.

I have known the Barth Syndrome Foundation (BSF) for more than a dozen years and have watched it serve families with support and information, invest in research and dedicate itself to educating physicians about this extremely rare illness. With a small staff and big plans, BSF is now working hard on treatments, including the beginning of clinical trials. This small organization supports scientific research every year through carefully selected grants vetted by a world class Science and Medicine Board. BSF meets the standards of the Better Business Bureau and the National Health Council. It is an extraordinary organization.

This group has been incredibly welcoming to me as a volunteer. They are passionate, organized and focused. I have never worked with a group this amazing.

Our son had a tentative diagnosis at the age of 2 but for years we knew of no other living child with Barth syndrome. It was a lonely and terrifying time. The Barth Syndrome Foundation has created a community of families who provide support and learning to each other. Even better, BSF has funded research into the causes and potential cures for this deadly disorder. Our son lived for almost three decades before Barth syndrome took him from us, but since BSF has been around we never felt lonely and we never lost hope for a cure. This organization is a model for rare disorders and those who suffer from them!! Thank you, BSF!

Couldn't wish for a better foundation and community! This is such a wonderful group of dedicated families and professionals seeking to support and ultimately cure our barth guys. We have been in touch with this organization for the last 5 years and our life has since been enriched with understanding, support and hope!

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.

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.

Barth Syndrome Foundation's commitment to advance an awareness and science behind this enigmatic killer makes BSF truly the Best nonprofit organization.

BSF is the Little Engine that Could! Barth Syndrome affects a very small number of families but the effects can be devastating. BSF serves affected families, supports clinical caregivers with up to date information for this complicated multi-system disorder and has funded almost $4M in competitively awarded research grants in the last 10 years. They run an incredibly well attended International Science, Medicine and Family Conference every two years, the next is coming up in July of this year. They are an invaluable resource for all three groups and a model organization for such a rare disorder!

The Barth Syndrome Foundation has been a great support for our family since my grandson Jacob was diagnosed in 1998 at the age of 4 months. He had a heart transplant at the age of two and was on life support for 11 weeks. We had support from the Barth community. He had a second Transplant at the age of 16 and again we had the support of the community of
families going through some of the same things we did. It is a very worthy nonprofit.

My brother,Bob was diagnosed with Barth Sydrome about 12 years ago.i reached out to Shelley Bowen,and she immediately returned my call.I don't remember everything but i did learn more about barth syndrome. My grandson was born in September 2008 and was diagnosed with Barth Sydrome in January of 2009.My grandson got the gift of life by having a heart transplant at the ageof 11 months.. We were told without a heart transplant byhis 1st Birthday, he may not live much past that. This was my witnees of a miracle, and I thank this organization for saving lives. Mary Klein

This an absolute wonderful organization. There is so much love, understanding, and information. Every single person will do everything they can to help each other. It is a tight community with friendships that will last a life time.

Barth syndrome Foundation is an amazing organization. BSF helps to fund research for a disease that is not readily known to the general public or to most medical professionals. It reaches out to the families of affected individuals and their families, it helps people to understand the disease and offers support to the families. They have set up a wonderful network for families, affected individuals,and professionals to support, inform and encourage each other. Every two years they organize a conference for the families, medical professionals, and researchers to come together and help each other in finding a cure for this rare disease. This group has helped ease the burden of the families affected

We lost our son Alasdair Leonard Gray to Barth Syndrome last year. We had never heard of it. Since then we have been active in fundraising for this wonderful foundation ("trust" in the UK).
Alasdair's dad x

BSF creates a community for families that previously felt terribly alone with this rare disease. On top of that, with the active participation of some of the best physicians and researchers around the world, we have made discoveries for treatment and, we believe, eventually a cure that exceed even our own very high expectations of ourselves. The rigor of our research grant process has made this possible, along with our commitment to never give up.

BSF is an amazing foundation. They are an invaluable resource to those of us with families affected by Barth syndrome.

Our son has been living with Barth Syndrome for 21 years. Since the very beginning, when 3 mothers found each other on the Internet, this Foundation has been second to none. To this day, it is, without question, a great source of information, guidance, education & support. In fact, there are two women specifically, Shelley Bowen & Lynda Sedefian, who deserve a loud, long, "Standing ovation"...

The Barth Syndrome Foundation and their affiliate the Barth Syndrome Trust in UK changed my life. I am a mother of a person with Barth Syndrome. The support and information we received from this organisation helped me strongly in finding my way to cope in a better way with this terrible disease.
The doctors of my son get better information about treatments that work and about those that don't work. The BSF finances very important research, that is not only important for patients with Barth Syndrome, but that can be very helpful for other rare diseases and for widelyspread diseases as Alzheimer and neutropenia after cancer treatments. I met other affected families via meetings organised by BSF and many of those families have become real life friends and are more supportive and compassionate than my own family.

It is absolutely stunning what BSF manages to do in so many areas. Financing and coordinating scientific research, bringing patients with Barth syndrome together (online and face to face), supplying information for patients, families and physicians. And the bi-annual conferences bring all these topics together. No other patient group has been able to do any of this on such large skill, let alone for a rare disease.

BSF is a like a second family for us. When our son was diagnosed they were right there to comfort us and answer any questions that we had about Barth Syndrome. It is a loving, helpful and supporting group of people that work together for our boys. They have made a huge difference in our life. BSF is hope for a cure!

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.

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 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.

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.