Volume 11, Issue 2 - Barth Syndrome Foundation

My Strong Volunteer Connection with Barth Syndrome
By Bruce Justin (BJ) Develle, Social Worker, Florida
In 1998, while away from home at college, I met the Bowens
and was instantly welcomed as part of their family (home
cooked meals, laundry done, comfortable bed, etc). In
hanging out with them, I began to better understand Barth
syndrome and witnessed their family’s search for information,
along with that of other families in a similar situation. When
I had the opportunity to meet other parents at a meeting in
Steinhatchee, FL, I felt instantly welcomed as one of their
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when I met the other affected young men that I cemented my
connection with BSF. The young men and siblings I worked
with during that conference amazed me with their maturity,
(R-L) BJ Develle together with his wife, Greta, and daughter, Georgia
understanding and perspective about Barth syndrome and
how they were affected. That week, I met more BSF families
from around the world and found myself being pulled in as
one of them. Given how close this community is, I felt honored to be greeted with so many open arms, hearts and emotions.
From that point on, phone calls or emails from other states and countries became a welcome part of my life, as I kept in
contact with those young men and their families. I heard more about their everyday lives, and they inquired about mine. We
have shared excitement about successes and opportunities, anxiety about the unknown, and consoled each other when
necessary.
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They provided encouragement for me to become more involved; spreading information about Barth syndrome and the
Foundation, assisting with conference planning and programming, as well as utilizing my professional training and skills
to provide guidance and assistance to individual families. Over the years, I have attended planning meetings, multiple
conferences and even travelled internationally to work with this community. During this past year, I was approached by the
Barth Syndrome Foundation of Canada on a professional level to interview their affected young men and provide guidance
into the needs of their community. Following that, they invited me to come to Canada and meet with several of the young
men for a discussion about addressing and overcoming relationship obstacles emerging from Barth syndrome. The meeting
with the affected males went very well, and, of course, I loved getting to spend more time socially with all of them.
I look forward to more events and opportunities with BSF and its community, both professionally and personally, and I feel
honored to be a part of this amazing family.
Page 16 Barth Syndrome Journal ~ Volume 11, Issue 2
Editor's note: BJ currently works for the state of Florida’s
Agency for Health Care Administration interpreting policy and
monitoring Substance Abuse and Mental Health providers.
Previously, he provided case management and therapy
services to children and specialized training to foster parents
and professionals who would work with them. He has worked
with both males and females with histories of physical and
sexual abuse, brain injuries, mood disorders, drug exposure,
suicidal and homicidal attempts and psychiatric residential
placements, both in the community and within a group home
he managed. BJ graduated from Florida State University with
a Masters in Social Work in 2008, after earning Bachelors
degrees in Child Development and Religion in 2002.
Greta and BJ with their daughter, Georgia, and husky, Loredo
(Photos courtesy of BJ Develle ~ 2011)