:: National Marfan Foundation ::

Mary Ahearn, President
Mahearn54@aol.com

Mary is a government economist who has been a member of NMF since she and family members were diagnosed with Marfan syndrome after her brother required emergency aortic surgery. With today's excellent medical care and support, she strongly believes that knowing your diagnosis is critical and is committed to helping raise awareness in the community. The NMF has brought Mary and her family members invaluable medical resources and opportunities for support

Jen Leadroot
Jleadro1@jhu.edu

Gretchen Oswald
Goswald1@jhmi.edu

Gretchen is a genetic counselor at the Johns Hopkins University Institute of Genetic Medicine and has worked in the connective tissue clinic since 2001. Besides clinical responsibilities, she also assists with various research projects revolving around Marfan syndrome and related disorders. Gretchen is also co-founder and vice-president of the Loeys-Dietz Syndrome Foundation.

Amy Speck
siberianspring@hughes.net

Amy is the mom of Daniel Speck, who was diagnosed with Marfan syndrome in 2006 at age 7. A graduate of University of Maryland University College, Amy has a degree in psychology and elementary education. For the past 5 years, Amy has been home schooling Daniel. Amy, her husband Larry, and Daniel live in Southern Washington County, Maryland

Committees

Communications Committee

Jeanne Heller George, Acting Communications Committee Director
j.heller.george@gmail.com

Mary Ahearn, Acting President
2413 Mumford Drive
Silver Spring, MD 20906
301 933-2112
Mahearn54@aol.com

The NMF Mid-Atlantic Chapter, emerging from the Maryland-DC-Northern Virginia Network Group, is a local meeting of the National Marfan Foundation that serves members in the Delaware, Washington, D.C., Virginia, West Virginia, and Maryland area by providing connections with peers, education on the Marfan syndrome and related disorders, support for affected individuals and their family members, as well as ways to reach out and improve awareness in the community. We also do fundraising to support NMF programs that in turn serve our members. As an emerging chapter, we welcome new members to contact us and let us know how they would like to contribute to the mission of the NMF.

Our Chapter's territory is very large; would you like to hold local meetings in your area? Please let us know.

Summer Date to Be Determined: Lunch and Smithsonian Museum Tour for Families
Washington, D.C.
Families interested in attending, please contact Amy Speck at siberianspring@hughes.net.

July 15, 2010 (Thursday): Gene Screen: A Night of Film on Health and Genetics
A Genetics Alliance annual film event, in coordination with their annual conference.
Go to geneticalliance.org to register and for further information. A $5.00 donation is suggested but not required.
E Street Cinema, 555 11th Street, NW; Washington, DC 20004. Enter on E Street, between 10th and 11th Streets.

6 p.m.: In My Hands: A Story of Marfan Syndrome
“In My Hands is a powerful testament to human resilience and understanding, one that will help each of us with our own lives.” William Haseltine, The Atlantic online.
“This inspiring film brings hope to parents and caregivers of children who are "different." People with the condition are frequently tall, with disproportionately long arms and legs. Young people, especially, are challenged by looking different than their peers. In My Hands asks the universal questions. Who am I? What am I? Different, and that’s ok. Dancer and choreographer Ann Reinking, whose son Chris is affected with the condition, works with a group of teenagers, designing movement and dance that capitalizes on their shaky long bodies, and unexpectedly, inspires their self-esteem.”
About In My Hands from: http://www.marfan.org/marfan/4004/In-My-Hands-Documentary.
Would you like to join other Mid-Atlantic members for the viewing?
Please contact Jeanne at j.heller.george@gmail.com.
7 p.m.: Jonathan Martin, NMF Director of Education and Public Awareness, will be joining the panel discussion following the screening.

7:30 p.m.: A series of 4 short films
The Power of Two (Trailer)            A feature-length, character-driven documentary in production, with international implications about the importance of organ donation and transplantation.
Mito-Kids: Documenting Life          A family tries to balance the fine line between spoiling your kids and making sure every day is treasured while managing relations affected by medical challenges.
Jewish Genetic Disease      The lives of three families touched by the experience of a Jewish genetic disorder.
On Beauty              An excerpt, photographer Rick Guidotti celebrates the beauty and lives of children who have been diagnosed with a genetic condition.
8:15pm: Q&A with filmmakers

9 p.m.: Darius Goes West: The Roll of His Life (First Prize Winner)
15-year-old Darius Weems, who has Duchenne muscular dystrophy, gets help from some college-age friends to try to get his wheelchair customized on Pimp My Ride.
10pm: Q&A with filmmakers

July 18, 2010 (Sunday): Genetic Alliance Art of Listening Award Ceremony
Dr. Hal Dietz is being honored with the GA Art of Listening award. While Dr. Dietz is not able to attend, Gretchen Oswald and Mary Ahearn will be attending to accept the award on his behalf.
For further information, please contact Mary Ahearn at mahearn54@aol.com.

Sponsored by
Sponsorship opportunities are still available. Please contact Rob or Kelly Berklite, details below.

Gift Cards Donated by
Please check back, more to come!
Olive Garden Ÿ Outback Steakhouse Ÿ Glory Days Ÿ Fratelli Restaurant

Sports Items Ÿ Celebrity Collector Items
2 Redskins Hats signed by #30 Brian Mitchell
Comcast and ESPN Radio Broadcaster & Former ‘Skins All-pro Kick-Returner

Specialty Gifts Ÿ Collector’s Items
Tuck it away for the holidays! More items to come, please check back!

Ercuis of Paris Solid Brass Miniature Carriage Clock
2 Jay Strongwater “Agatha” Jeweled Frames

Giving Options: Online Giving and Matching Gifts
Online Giving
Visit: www.marfan.org/marfan/2836/Support-a-Local-Fundraiser
Click: Donate to a local fundraiser. Complete the NMF Local Fundraising Event page.
Name of event: Golf-NMF-Mid-Atl

Matching Gifts
Please contact your employer about matching your contribution!

August 29, 2010 (Sunday): Barbeque at Rob and Kelly Berklite's, 1:00 - 4:30 p.m.
For more information, contact kberklite@verizon.net.

Welcome from the Mid-Atlantic Chapter
Would you like to get involved with the developing Chapter? Your interest and involvement is most welcome. Please contact an acting officer or board member by scrolling up to “Meet Our Acting Officers and Board Members” for contact information and let us know.

Thank You to All Volunteers
Many thanks to everyone who supported our February and March events with your donated hours and abundant good will. We send a special thank you to all of the Johns Hopkins staff members who donated volunteer hours before and during the event to help make the March 6th event so successful. Scroll down for articles on the two events.

Chapter Webpage
Thanks to everyone who sent in materials to update the webpage and the staff at our national organization for their help and guidance.

Are you handy with a camera?
Please keep this in mind for pictures of your NMF activities. They could be a very nice addition for our Chapter webpage and perhaps a nice contribution for our national organization’s Connective Issues newsletter as well.

June 30, 2010 (Wednesday): NMF Lobby Day on Capitol Hill
Nine Mid-Atlantic members joined other NMF members from around the country for a full day of advocacy on the Hill. A Mid-Atlantic Provisional Chapter meeting with NMF national staff followed. Details are being gathered; please visit us again for our update. Thank you to all the photographers who helped record this very special day.

April 1, 2010 (Thursday): Patient Forum: Howard University Medical School
hosted by the Organization of Student Representatives (OSR) the Association of American Medical Colleges (AAMC) of Howard University Medical School

“…having the opportunity to put "a face" with the disease makes it a lot easier to learn.”
– Aronica Cotton, Patient Forum Moderator, Howard University Medical School, third year

The NMF was invited to present at the April 1 Patient Forum, in the words of Aronica, “to foster humanitarianism in medicine by emphasizing that what we cover in the classroom is not just "words on a page", but are real people. You helping us to create more compassionate physicians is terrific and we are truly grateful.”

Mid-Atlantic members Mary Ahearn, daughter Anna, and Catherine George presented their experience as individuals with the diagnosis and welcomed questions from the students. All NMF members who attended were touched by the sincere warm welcome, full attendance, heartfelt thanks, and warm applause offered by the students at the mid-day presentation.

March 6, 2010
"Recent Developments in the Diagnosis and Treatment of Marfan Syndrome," Dr. Hal Dietz, speaker
2010 Art of Listening Award, presented to Dr. Hal Dietz by Natasha Bonhomme of Genetic Alliance (GA)
NMF Mid-Atlantic Provisional Chapter business meeting
Johns Hopkins University Medical Campus, Baltimore, MD

With about 40 guests attending, the Mid-Atlantic Provisional Chapter featured expert speaker, Dr. Hal Dietz, as he gave an incredible presentation of Recent Developments in Marfan Syndrome Research. Dr. Dietz followed the speech with a generous question and answer period. Insightful questions from the audience received thoughtful as well as very informative responses. Hearing Dr. Dietz describe the significant increase in the number of Marfan syndrome and related disorders researchers were welcome words indeed. He also shared his optimism for substantive advances in the future thanks to the many research projects in the pipeline at this time.

Another highlight of the event was the presentation of the Art of Listening Award to Dr. Dietz by the nonprofit organization, Genetic Alliance. This award is presented each year to a health professional, across all genetic fields, who goes beyond what is required, taking the time to listen and understand, and contributing to the acceleration of research and treatment for a particular disease. Dr. Dietz was nominated by members of the local NMF group. Many of those in attendance are Dr. Dietz’s regular patients so it was such a pleasure to be able to participate in honoring an individual who has made, and continues to make, such a difference in their lives. An album of letters of appreciation from members of the Marfan community was presented to Dr. Dietz with great appreciation.

Following the award presentation, Mary Ahearn, acting president, conducted a brief business meeting of the Mid-Atlantic Provisional Chapter. Dr. Kathryn Holmes, pediatric cardiologist with Johns Hopkins Children’s Center, spoke of the importance of the GenTAC Registry and invited attendees to meet with her during the reception.

If you would like to get involved with the developing Mid-Atlantic Chapter, please contact an acting officer or board member. Your interest and involvement is most welcome. Scroll up to “Meet Our Acting Officers and Board Members” for contact information.

A casual reception in honor of Dr. Dietz followed. Guests relaxed and mingled with many new things to talk about as well as new people to meet and old friends to say hello to.

Many thanks to Dr. Dietz and his staff for making the meeting place available for such a special occasion as well as the local NMF volunteers who helped with the event.

Gretchen Oswald, M.S., CGC, Genetic Counselor, JHU Institute of Genetic Medicine and Pediatrics and Dr. Hal Dietz, Professor of Genetics and Medicine, JHU School of Medicine, Institute of Genetic Medicine, join with young friends for a special shot.

February 28, 2010
NMF Marfan Syndrome Awareness Event
University of Maryland Lady Terps vs. Florida State University (FSU) Lady Seminoles
University of Maryland Comcast Center, College Park

The provisional Mid-Atlantic Chapter held an awareness event at a University of Maryland Lady Terps vs. Florida State University Lady Seminoles game. The University of Maryland kindly allowed local NMF volunteers to distribute information to interested fans at the game and made an announcement about our presence and a brief description of Marfan syndrome during a break in the action. It was a thrill to see the NMF logo prominently featured on the scoreboard! Sadly, both universities have lost basketball players to undiagnosed Marfan syndrome. The University of Maryland lost Chris Patton in 1976 and Florida State University lost Ronalda Pierce as recently as 2004. Along with their expressions of support for the group’s awareness efforts, both Terps Coach Brenda Frese and Seminole Coach Sue Semrau posed for photos with the volunteers. In honor of Ronalda, Coach Sue presents the Ronalda Heart Award each year to the player that best exemplifies the high standards that Ronalda exemplified on and off the court. The game was televised on ESPN2. Read Coach Sue's tribute to Ronalda Pierce here.

A big thank you to Hard Times Cafe, College Park, for generously donating 20% of all NMF related purchases after the game to the National Marfan Foundation. $265.00 was raised for the NMF. Thank You So Much, Hard Times Café College Park, and to everyone who participated.

Hounds Helping Hearts Dog Walk
Washington County Tail Waggers 4-H Club
October 24, 2009, Washington County Ag. Center, Sharpsburg, MD

The Tail Waggers 4-H Club decided to hold a dog walk to raise funds for the NMF, learning that one of their members, Daniel Speck, is affected by the syndrome. Despite the rainy and windy weather, the dog walk was an enormous success, raising over $3000.00. Canine agility games and a silent auction added even more fun to the event.

NMF - Foster’s Grille Fundraiser and Raffle
Jessica Berklite, family and friends
March 25, 2009, Chantilly, VA

Springtime Social and Network Group Meeting, Maryland-DC-Northern Virginia Network Group
March 21, 2009, Silver Spring, MD