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JOHNS HOPKINS ARRHYTHMOGENIC RIGHT VENTRICULAR
DYSPLASIA/CARDIOMYOPATHY PROGRAM
Volume 3, Issue 2 Summer 2013
The 14
th
Annual ARVD/C Patient and Family Seminar was the best one
yet with approximately 170 individuals and family members affected by
this condition in attendance. Those that arrived into Baltimore early
Friday evening attended a Meet ‘n Greet at the Hilton Garden Inn (the
new hotel for this year) and enjoyed some hors d'oeuvres and company
of old and new friends.
The actual seminar began Saturday morning where participants
attended several presentations that addressed various aspects of
ARVD/C, including diagnosis, genetics, disease mechanism, catheter
ablation, role of exercise, meditation, as well as the psychosocial
aspects of living with ARVD/C.
We were excited to have two featured guest speakers this year. Dr.
Peter van Tintelen from the University of Groningen, The Netherlands
presented “Genes, Mutations and ARVC; One Big Family?” Dr. Samuel
Sears from East Carolina University returned once again and presented
“Confident Living 2013”.
Dr. Mario Delmar and his wife, Dr. Marina Cerrone, were guests at our
2012 seminar and enjoyed it so much, they returned to give an update
on their current and proposed work on ARVD/C. Dr. Dan Judge also
presented our recent collaborative work with Dr. Vincent Chen published
in Nature earlier this year. After lunch, a large Question & Answer
Session was held where attendees could ask questions of Dr. Calkins,
Dr. van Tintelen, Dr. Sears, Dr. Judge, and Dr. Delmar. We also offered
a meditation workshop to introduce seminar attendees to another option
for living well with ARVD/C, as well as a discussion group for attendees
in their teens and twenties. In addition, there were several research
opportunities throughout the afternoon, including blood draws, Holter
patches, and ICD interrogations. We would like to thank everyone who
was able to stay and participate in the various research studies. Without
you, our program would not exist and we would not be able to improve
our understanding of ARVD/C. For those of you who were unable to
attend, you were missed and we certainly hope to see you at our 15
th
Annual Patient and Family Seminar next Spring.
2013 ARVD/C Family Seminar
In this Issue… page
2013 ARVD Family Seminar 1, 2
Make-A-Wish
®
Recipient 2
Featured Manuscript 2
Heart Rhythm Society 3
Abstracts
Hopkins Research Review 4
Research Opportunities 5
Patient Stories 6
Support Group Info 7
Upcoming Fundraisers 7
Make a Donation 7
ARVD Program Contact Info 7
Save the Date!!!
Next Seminar tentatively
planned for May 3
rd
, 2014
Mario Delmar
Marina Cerrone
Samuel Sears
Peter van Tintelen
