Fall 2010 - National Marfan Foundation

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National Volunteer Network
Massachusetts Chapter
On May 1, the Massachusetts Chapter held its first Celebration
of Marfan Life and History event, attracting 128 guests
as well as medical staff from Brigham and Women’s Hospital’s
Marfan and Related Connective Disorder Clinic. They were
treated to music composed, created and/or performed by
musicians throughout history who were suspected of having
Marfan syndrome and shown a live performance by cast members
of RENT from the Stoughton Stars Theatre Group. Miss
Tall Boston 2010 also attended and helped sell raffle tickets.
Close to $5,000 was raised for the Massachusetts Chapter.
Northern Illinois Chapter
The Northern Illinois Chapter’s 17th Annual Walk-a-Thon
took place on June 6 at Ty Warner Park in Westmont, IL,
with 158 participants. They all enjoyed a picnic sponsored by
the Paramount Tall Club immediately afterwards. A special
part of the day is releasing balloons in memory of loved ones
as their names are read aloud. This year, several chapter members
created personal fundraising pages through Firstgiving to offer
friends and family an additional way to donate. The Walk
raised close to $10,000, which included $1,700 through
online fundraising.
Visit the NMF website for information on the chapter’s recent
chocolate bar fundraiser and medical education efforts.
Fall 2010
Chapter and Network Group News:
Each OneReach One
Heart ofIowaChapter
On an evening in July, members of the Heart of Iowa Chapter
raised money at Pizza Ranch. They bussed tables, helped people
get drinks, kept the pizza buffet loaded and received all the
tips for the night, which amounted to $182.05. Then they
handled the clean up for the evening—vacuuming, sweeping,
mopping and cleaning bathrooms! They had a great time,
raised money and generated awareness of Marfan syndrome
among the restaurant patrons.
NH/VT Network Group Symposium
On May 8, the New Hampshire/Vermont Network Group
held its First Annual Educational Symposium, “Marfan
Syndrome and Related Disorders: What Every Physician and
Patient Should Know,” at Dartmouth-Hitchcock Medical
Center in Lebanon, NH. Workshops covered topics of interest
to affected individuals and families, physicians, fellows,
physicians in training, physician assistants, nurse practitioners,
nurses, pharmacists and other healthcare professionals.
Northern California Chapter
On May 1, the Northern California Chapter held its Third
Annual Regional Marfan Educational Symposium in Rocklin,
CA, with 54 adults and 12 children and teens in attendance.
There was an impressive line-up of speakers including Dr.
David Liang, Associate Professor and Director of The Stanford
University Center for Marfan Syndrome and Aortic Disorders,
and Dr. Michael Fischbein, Assistant Professor of Cardiothoracic
Surgery at Stanford University Medical Center. Thanks to a
generous donation from the Sacramento Tall Club, the day
ended on a lighter note with a presention by ULaugh. While
the adults were busy in sessions, the youngsters enjoyed a fun
day of supervised activities. In addition to providing a valuable
educational forum, the chapter was able to raise more than
$1,175 through registration fees, donations and door prizes.
Plans for the 4th Annual Symposium on April 30, 2011, are
already underway.
Detroit Network Group
On April 18, the Detroit Network Group met to address the
topics “Coping with Marfan Syndrome” and “Living a Better
Life.” On April 21, six members of the group also participated
in the “Patients as Teachers Program,” which is part of the
first-year medical students’ Clinic Day at Wayne State University.
They shared their Marfan stories with the future doctors
to enhance their understanding of Marfan syndrome.