10 / 16
LIVING SUCCESSFULLY
WITH MARFAN SYNDROME AND RELATED DISORDERS
10
Marfan.orgANNUAL CONFERENCE
A LIGHT IN THE
DARK
Ann Reinking brings special ballet
performance to conference
During the conference, attendees
were treated to a special perform-
ance of A Light in the Dark, the
story of Helen Keller and Anne
Sullivan. The ballet was presented
by Thodos Dance Chicago and
co-choreographed by Ann Reinking
and Melissa Thodos. Reinking, the
Tony Award-winning actor and
choreographer, has a son with
Marfan syndrome and has been
a long-time supporter of The
Marfan Foundation. “We were
thrilled to work with Ann to make
this performance possible,” said
Benjamin Weisman, a member of
the Foundation’s Board of Directors.
“It was a wonderful, moving
production and gave conference
attendees another opportunity to
get together.”
MEAGHAN JOYCE (FOREGROUND) WITH PANELISTS HEATHER EARNHART AND KYLE MCARTHUR
Kyle McArthur, 17, of Wilsonville, OR,
who has Marfan syndrome
I found out about The Marfan Foundation
during a 7th grade science project and
ended up going to the conference that
year because it was in Portland. That
was possibly the best weekend of my
life. I could finally talk to someone about
what I was going through. I made a lot
of fantastic friends… Sometimes all we
need is for someone to be there who
understands.
Michael Kramer, of Rockville Centre,
NY, who has Marfan syndrome
I became active with The Marfan Foun-
dation so late because of my denial of
my condition. The main reason I became
involved was because of my seven-year-
old daughter, Emily, who is also affected
by Marfan syndrome. I want her and the
rest of the Marfan community to have a
much easier time with this condition than
I did… I want Emily to have an easier
road ahead of her than me, but if she
doesn’t, I want her to know that she can
do this and I’ll be right by her side
every step of the way.
Meaghan Joyce, 20, of Cape May, NJ,
who has Ehlers-Danlos syndrome
Being a part of The Marfan Foundation
has given me countless blessings. When
several children and teens in my home-
town were diagnosed with EDS and
Marfan syndrome, I was able to be their
mentor and help them understand that
being a Marf is not such a bad thing.
Through the Marfan Foundation I have
even narrowed down my career path —
my goal is to become the Dr. Dietz of
my generation.
Heather Earnhart, of Chicago, who has
a daughter with Marfan syndrome
Upon my daughter Gabriella’s diagnosis
of Marfan syndrome at age five, I spent
every free moment delving into docu-
ments, articles and papers I could find on
Google Scholar related to Marfan. I was
also lucky to have a great resource in
The Marfan Foundation. I strongly believe
that community is probably the best
support we can all have. Connecting with
people who know and understand the
specific trials we are all going through.
Remember to get informed and talk to
your child about how they feel.
The closing panel of our annual family conference featured several of our members
who are living successfully with their diagnosis. Here are excerpts.