Meet Our Community

When someone has Barth syndrome it affects the entire family. At times it seems overwhelming. There is so much to learn, a great deal to consider, and sometimes frightening because you don't know what you don't know. 

The Barth Syndrome Foundation is committed to provide all concerned with information, support, and resources to meet the challenges of living with Barth syndrome. Sometimes it's helpful to meet others who have gone through similar challenges. In this section, you will find a series of videos to introduce you to those people who are a lot like you.

Click on images to view videos


Florence shares her story behind establishing Barth France to expand the mission of BSF.


Michaela shares her story behind establishing Barth Syndrome Trust to expand the mission of BSF.


Paola shares her story behind establishing Barth Italy to expand the mission of BSF.


Jennefer shares her perspective of attending BSF's 2016 Conference.


David and Fraser, fathers of young men affected by Barth syndrome, share their perspectives of what is it like to be a parent of an affected individual as well as their perspective on attending BSF's 2016 Conference


Michelle and Angelo share their perspective of attending BSF's 2016 Conference.


Liz shares her perspective about being the sister of two boys who died early in life from Barth syndrome and raising a son, now a grown man who has become an active member of the BSF community over the years.


Steve, former BSF board member, father of a boy who has been diagnosed with Barth syndrome and a daughter who might be a potential carrier, shares his thoughts about the importance of supporting young girls who might be a carrier of Barth syndrome. He speaks about the importance of the Barth Syndrome Foundation (BSF) conference and insights about why families should contact BSF when they obtain a diagnosis of Barth syndrome to improve outcomes for all. 


A family shares their journey of having two sons with Barth syndrome. One son died without the benefit of a proper diagnosis. A diagnosis didn't arrive until the mother was pregnant with a second son who would also have Barth syndrome. Learn how this family triumphed from heartache to save their second son and the difference the Barth Syndrome Foundation has made in their lives.


Michaela shares her the story of her journey to obtain a diagnosis for her son and the importance of becoming an advocate when raising a chronically ill child. Michaela is the founder and chair of the Barth Syndrome Trust in the United Kingdom.


Hear the difference the Barth Syndrome Foundation community has made in this mother's life and the hope she believes parents receive and can share from being a part of our community.


A grandmother shares an account of her personal journey of being a mother of a child who died from Barth syndrome and the hope she has for her grandson who is living with Barth syndrome.


A mother of a young man who has Barth syndrome shares her thoughts about the difference Barth Syndrome Foundation (BSF) has made in raising her son. She speaks about the importance of joining BSF to unite in making a difference for those who have Barth syndrome.


A mother and daughter share their thoughts about attending the Barth Syndrome Foundation Biennial International Conferences.


A father speaks about the dad-to-dad experience that happens during the Barth Syndrome Foundation biennial conference and the importance of fathers supporting fathers when raising a son who has Barth syndrome.


A mom speaks about the importance of a community that just "gets it".


A mother shares the journey of finding a diagnosis for her son and her perspective of raising a child who has been diagnosed with Barth syndrome. (Part I) 


A mother shares her thoughts about the Barth Syndrome Foundation International Conference. 


Today Show Episode: Turning Anguish into Action
February 16, 2009

Barth Syndrome Foundation featured in PARADE Magazine and profiled on the NBC TODAY SHOW! 

The Barth Syndrome Foundation (through one Barth family -- Steve, Kate and Will McCurdy) was profiled in the on-line version of PARADE Magazine on Saturday, February 14, 2009 and featured on the Today Show on Monday, February 16, 2009.

PARADE Magazine ~ Fighting a Rare Illness
By Meg Massey
February 14, 2009


A father shares the journey of obtaining a diagnosis for two of his three triplets and the difference the Barth Syndrome Foundation has made in his children's lives since receiving that diagnosis. (Part I)


A father talks about how his family is benefiting from the programs and services the Barth Syndrome Foundation provides.

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