Volume 11, Issue 2 - Barth Syndrome Foundation

Hooray –– 2012 is a Conference Year!
By Sue Wilkins, Board Member, Barth Syndrome Foundation
Iam so excited that 2012 is another BSF Conference
year! The Conference is such an exhilarating, amazing,
“there really are no words to describe” kind of event ---
that NEVER disappoints. It’s one of those weeks that my
���������������������������������������������������������������
so hard to say goodbye to everyone and wait two more years
to see our Barth family again. And, hooray!!! It’s almost time;
2012 is a Conference year!
We will be at an historic, incredible location — the Pink
Palace — otherwise known as the famous Don CeSar Hotel,
right on the beach in St. Pete Beach, Florida. I understand
that the hotel has fun activities for kids and that there are
things to do outside of the hotel. But MOST importantly, we
will all be together again.
At the risk of sounding like the BSF “matron” that I am….when
Shelley Bowen, Anna Dunn and I (with the help of our own,
�����������������������������������������������������������
of what became the start of our Barth organization in 2000,
we did so on a wing and a prayer. We were three driven
�������� ����������� ��� ���� ����� ��������� ������� ����� ������
syndrome (BTHS). We had no earthly idea that it would be
���������������������������������������������������������������
together to help our sons — your son and mine.
As we often say, especially when a new family joins us,
this isn’t a group any of us would choose to be a part of,
but we are so grateful that we are all in this together and
have each other. Each of YOU brings more information,
more experience, more knowledge about Barth syndrome
-- whether your child is an infant or 20 years old. YOU are
the expert about how BTHS affects your son and your family.
Each of YOU is an incredibly critical link in the chain of
discovery to help each of our sons. I don’t know about you,
but each of YOU is a part of my family like no other. YOU
get it. YOU instantly understand. YOU are the connection to
living with BTHS that I can’t get anywhere else in the world.
So…that’s why I’m so excited that, in a few short months,
we’ll be together for another week! It really is like a “shot in
the arm”… a BTHS family booster that keeps us going for
another two years. And I for one, cannot wait!
Page 6 Barth Syndrome Journal ~ Volume 11, Issue 2
Who says our BTHS boys can't perform like Beethoven
(Photo courtesy of Cherie Schrader ~ BSF 2010 Conference)
Based on the feedback you have given in evaluations
and surveys, we are in the process of designing the 2012
Conference agenda and schedule. Details will be available
soon on the web and listserv, and we can assure you it will
be another educational and fun meeting!
I know that many of you are making plans to attend, having
fundraisers to help defray the costs and arranging for time
off work. For those of us affected by and living with BTHS in
our families, I cannot imagine a more important week to be a
part of... and it comes by only once every two years. Not only
will we have the opportunity to sit with the world’s experts on
BTHS, to ask questions, to hear the latest research results,
to visit with the scientists, researchers and doctors, but ALSO
to have a week to talk face to face with the world’s experts in
living with a child with Barth — each other — and to give our
kids --- affected boys and their siblings --- ONE week in two
years to be together. As one new mom at the last conference
said, “My son is normal here.”
I’ll end as I’ve started — my family and I cannot wait to see
you and your family in a few short months on the beach at
our 2012 BSF Conference!!!
Family Sessions at BSF's 2010 Conference
(Photos courtesy of Cherie Schrader ~ 2010)