:: National Marfan Foundation ::

Meet our Officers, Board of Directors, Advisors, Service Programs, Chapter Support

Amy Speck, President
1805 Harpers Ferry Road
Knoxville, MD 21758
(301) 371-5660 Home
(301) 693-9645 Cell
siberianspring@hughes.net

Our Chapter territory includes Delaware; Maryland; Virginia; Washington, DC; and West Virginia. Some of our Chapter activities include life-saving education and awareness programs for members as well as the community at large; social support programs; and fundraisers for Marfan syndrome and related disorders. If you have an interest in learning more about the Chapter or your Marfan community, we welcome you to contact us. Please scroll up to our list of officers and board members and let us know.

Our Chapter's territory is very large. If you would like a meeting to be held in your area, please let us know.

Announcements

Officer and Board Member Announcements
Lisa Riiber Thank you to our outgoing vice-president, Lisa Riiber, for the time and good will she provided to our Chapter as our first vice-president. Lisa has a new job and travels extensively, which leaves her less time to participate in Chapter activities. We are so happy that she will continue her involvement with the Chapter as a Board member. Thank you, Lisa.
Kelly Berklite Kelly has offered to fill the position of vice-president and was approved by vote of the Chapter members present at the January 8, 2012, planning meeting. Kelly has previously served as a Board member, as well as being a very active Chapter member which has included being co-chair of the Annual Mid-Atlantic Golf Tournament. We are so grateful to Kelly for supporting the Chapter in this new role and know the Chapter will benefit with her support. Welcome, Kelly and thank you!

The Heartfelt Taste of Home service project is a way for Chapter members to support those who experience extended stays at area hospitals while undergoing Marfan-related care. The program focuses on patients and their families who are from out of the area and faced with an extended Marfan-related stay, either due to surgery, or to Marfan-related complications, at Johns Hopkins University Hospital, Baltimore, Maryland. The Chapter provides a friendly welcome by providing gift baskets of comfort items as well as a get well card to those who express an interest to the hospital staff at Hopkins who are coordinating with the Chapter for this project. Cindy has gathered some wonderful items for the project. At the present time she has not been contacted either directly by a family or though Libby Sparks or Gretchen Oswald at Hopkins for this service. We are ready to support these families and welcome referrals from Libby or Gretchen for our assistance.

An Open Invitation If you or someone you know will be coming to the Baltimore area from out of town for Marfan-related medical care and would benefit from our outreach and support efforts, we welcome you to contact us.

Calling all Volunteers We are seeking Chapter volunteers, particularly in the Baltimore area, who are able to help with this outreach project.

Contact Please contact Cindy Amdur, Heartfelt Taste of Home Coordinator, (301) 879-1602, amdurclark@yahoo.com, if you would like to help.

Staying Connected: Missed Emails and Mailings
In our effort to provide you with support and information concerning our Chapter, we need to ensure that our database is up-to-date. The database that generates our emails and mailings is maintained by our home office in Port Washington, NY. Our national office staff also tackles the job of producing our mailings and getting them to the post office for us, which we greatly appreciate. Mass mailings are sent out one time per fiscal year. The majority of announcements are communicated through our web page and email blasts. We are interested in keeping our contact list current and reaching everyone. We would appreciate your help with this. Please provide us with your current mailing address and email by contacing Catherine George at cehgeorge@gmail.com or (301) 772-3082. If we do not hear from you, a member from our Chapter will be contacting you in the fall to verify your information and find out how we can better support each other.

Chapter Brochure Available
Click here to download the Chapter brochure we have produced. We would love to hear your feedback. Please forward any suggestions or comments to our Chapter president, Amy Speck siberianspring@hughes.net.

Student Service Hours Forms Available
Forms are available for students to complete and report their student service hours.

Click here to download the Student Volunteer Time Sheet.
Click here to download the Student Volunteer Event Specific Time Sheet.

Chapter Banner and Tripod Available for Event Support
A vinyl Mid-Atlantic Chapter banner and a collapsible display tripod to hold posters and similar materials are available for event support. If you would like to borrow either, please contact our Chapter president.

Lending Library
Interested in our lending library? If so, please contact our Chapter president to learn more.

Thanks to Dru Bleecher for sharing this wonderful poem she wrote for her son, Nathan.

My fingers are long, they reach for the stars,
They tickle, they bend and play guitar.

My feet turn in, mom says they're cute,
I walk around a lot in my size 12 boots.

My face is narrow with downward eyes,
My glasses are sweet and square,
I'm a very handsome guy with bright green eyes and tawny hair.

I like to hike, shoot bow and arrow and swim,
and hang out with my crew,
I don't like to miss gym, but there is lots for me to do.

I love computers, I love my Wii,
I love to dance and laugh,
I'm as special as can be and great with arts and crafts.

People think I'm older in places like school and stores,
I adapt just like a soldier and it makes me more mature.

Whether a person is short or tall, it doesn't matter to me,
We are special one and all, we are who we're supposed to be.

Welcome from the Mid-Atlantic Chapter
Would you like to meet others in the Marfan community or learn about the various Chapter activities? Your interest and involvement are very welcome. Please contact an officer or board member by scrolling up to Meet Our Officers and Board Members for contact information and let us know.

Volunteer Thank You and Opportunities for High School Volunteer Service Hours
Thanks to all of the volunteers who support our various programs and events with your donated time and abundant good will. Please also keep in mind that our various activities can be a fun opportunity for a high school student that you may know who is looking for an enjoyable way to complete volunteer serivce hours while supporting a worthwhile cause.

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.

News

Marfan Awareness Event, NBC4 Health & Fitness EXPO
January 14-15, 2012
Washington Convention Center, Washington, DC
It appears the event went very well. Our Chapter volunteers were excellent. Each individual was not only cordial, but also friendly, very approachable and knowledgeable. If they were unsure, I did overhear people saying, "I don't know, let me check," rather than guess at an answer. I believe our mission of providing information with the spirit of hope and positive support was achieved. No one displayed worry or fearfulness when discussing the syndrome's symptoms. I was very proud of the job all of the volunteers did in terms of providing a warm presence of good will to the booth visitors. We did staff the booth for the entire time. The quality of volunteerism was superior. Each of our booth volunteers gave over 100% in terms of their readiness and responsiveness. All of this contributed to the time spent being a joy for many of us as we came together to support the awareness mission in this way. We certainly enjoyed seeing each other, and that had us in high spirits for most of the time. People were comfortable to break away and check out the EXPO, if they cared to. Three volunteers were not able to make it this year due to illness. I feel that next year, it would be a good idea to have an entire list of backup volunteers, just in case even more people get sick. We learned there were some very nasty viruses going around, and we could have been short staffed if everyone else got sick.

The main health sponsors this year were Children's Hospital and Washington Hospital Center (WHC). WHC has an excellent heart care staff and is very knowledgeable regarding MFS. Johns Hopkins Medicine had a display of their Washington metropolital health care centers which was more of an information source for their health plan and service areas. Other local hospitals represented included MedStar National Rehabilitation Network and Veterans Affairs Medical Center. DC Fire & EMS Dept. and Prince George's County Fire Dept./EMS had very substantial exhibits. Catherine left materials with them.

In regard to foot traffic, it was busier than last year. We later learned from the follow-up reporting by NBC4 that the event drew in 85,000 people over the course of the weekend. This was their most successful EXPO to date. We had good attendance from the time it opened until it closed on Sunday. There were occasional spells when we wondered if it was tapering off, and then it would start up again. We felt it was very worthwhile that we were there. Many of the visitors were sincerely interested and engaged, asking rather probing and intelligent questions. This actually helped build interest on our part and kept us engaged as well. The public we greeted included a wide variety of people of all ages, backgrounds and interests. Some were from the medical field; some wanted to help volunteer a very specific way; some were concerned about someone they knew and wanted to learn more facts about the condition. We met a fellow with the Tall Clubs International (TCI) of Washington who offered to put us in touch with their local president. We also learned from booth visitors of the B'more Healthy EXPO, to be held on March 17, 2012 at the Baltimore Convention Center and sponsored by WBFF, Fox45/CW TV.

The information materials were a very good and helpful mix. The various materials worked well by complementing each other. The Chapter easel came in so handy. Jonathan Martin sent three of the new posters featuring Jonathan Larson. They were oversized and very eye catching. It was a nice addition to the booth presentation. Jonathan also sent a large quantity of pens, note pads and information materials. The new four panel fold-out piece is dynamite. We handed out a lot of them because they were so well written and eye catching. I especially liked the concise and informative way it covers the additional connective tissue disorders. We found that piece, in addition to the Chapter brochure, were a good pair to hand out to people who were especially interested. The Chapter brochure was so helpful because we didn't have to state the information it offered, which allowed us to concentrate on meeting people and talking to them. We gave away 2/3 of the quantity we had in the box, and were mindful to only hand them to people who might find them helpful.

NMF Mid-Atlantic Chapter Planning Meeting and Pot-Luck Lunch
January 8, 2012
We had a very productive meeting and appreciated the volume of feedback from everyone, with about 15 people attending. We are going forward into 2012 with a good game plan. It was great to have new and returning members who were not attached to the Board stay and provide us with their input and be willing to help with upcoming events. We are so pleased to have finalized the dates for the annual medical meeting as well as other Chapter activities. We are also so pleased that Carolyn Levering, our NMF President, and Kathy Jeffers, our NMF Manager of Volunteer Development, will be joining us! Please see Upcoming Meetings and Events for more details on all of our 2012 events.

Tidewater Network Group Meeting and Pot-Luck Dinner
November 19, 2011
Expert Medical Guest Speaker: Dr. Chris Barreiro, Cardiothoracic Surgeon
We had a great second gathering of the Tidewarter, Virginia Network Group. With the addition of three new families and nearly a full return from last meeting, attendance jumped to 25 people! The three folks from last meeting who couldn't attend both called in their regrets and want to stay active in the group. We have the full spectrum of professions represented, from psychiatry to plumbing.

We handed out awareness materials to two folks who want to visit EMTs and another person who wants to contact school nurses. I'll be doing the latter as well. In addition, a number of folks made copies of articles from the lending library. We have one new family with Spanish as their primary language and they were especially grateful for the articles translated into Spanish.

Dr. Chris Barreiro, despite being in the final days of studying for his Boards in cardiothoracic surgery, showed up with a tailored and detailed Powerpoint presentation. He mentioned that he had spent a lot of time in the past week using www.marfan.org to help him prepare for the meeting, so clearly that resource works for the phsycians as well. His talk and Q&A were terrific.

Finally, the pot-luck really provided a great time to chat and strengthen our bond as a group. At the end of the night we had graduated from handshakes to hugs all around!

Report submitted by J.D. Oliver.

The kick-off meeting of the Tidewarter Network Group was co-chaired by JD Oliver and his wife Jean MacLeay. There were 14 attendees -- 8 affected individuals and 6 family members. This is in spite of a thunderous rainstorm the hour before the meeting. Not a single "yes" RSVP was a no-show! All the attendees seemed excited and motivated to finally have a local Marfan community organized. We are extremely grateful that JD and Jean are willing and able to reach out to this geographical area of our chapter and offer our continued support to their network missions.

With three affected teens in attendance who have never been to a national conference, Jean and I as co-chairs wish to investigate the existing scholarship program with an eye toward allowing at least one of these young people to attend the Chicago conference next summer.

The group desires to meet about every two months, and decided to focus their efforts on educating both ourselves as well as the medical and school personnel in our region. To that end, we want to have speakers at meetings to help us learn the most we can about treatment options. As for raising awareness among our school and medical communities, we plan to kick off our awareness activities with an intial distribution of handout materials.

To sum up, the following focus areas were chosen for the first year:
1. Mutual support and frequent contact through our new roster
2. Speakers at meetings - genetics and cardiology are the first two topics on the list
3. Growth of Network Group by pitching our own local doctors prior to each meeting
4. Awareness campaign for school nurses and EMTs. A volunteer will coordinate and track visits on a spreadsheet.

On September 9, 2011, the Mid-Atlantic Chapter of the NMF hosted its 2nd annual golf tournament at the South Riding Golf Club in South Riding, VA. Building on last year's success, the tournament added a primary sponsor, Spring Hill Real Estate, who partnered with The Gridiron Legacy. This partnership brought four Super Bowl champion Washington Redskins to the event. The Redskins and the addition of an afternoon tea and spa for non-golfers, along with numerous other sponsors, helped the event to almost double last year's revenue. With over 70 paid golfers and an additional 30 attendees for dinner, the tournament raised over $11,500. Funds were raised through ticket sales for golf, a raffle, and a silent auction (where one of a kind, autographed sports memorabilia was up for grabs, including Redskins gear and a Tiger Woods autographed 18th Hole Flag from the 2006 PGA Championship at Medinah Country Club's most challenging course #3).

Dinner program highlights included a Marfan syndrome awareness message, the announcement of tournament, raffle and auction winners, and a message from Redskins great Gary Clark, who offererd to highlight the NMF on his television program. The evening was capped by a rendition of "Hail to the Redskins", led by Super Bowl champion Clarence Vaughn.

Lessons learned from last year, the tireless efforts of Mid-Atlantic members, the fantastic South Riding staff, and some great sponsors made this event a huge success. The only drawback resulting from this event will be figuring out how to top it next year!

Article submitted by Rob Berklite, event co-host

Click here for event program.

NMF Conference, July 15-17 2011, Portland, Oregon
Several members of the Mid-Atlantic Chapter from the Virginia and Maryland regions attended this three day event. Johns Hopkins Hospital was well represented on the panel of medical presenters, clinic staff, and as individual workshop presenters. Those who presented included Dr. Duke Cameron, MD, Director, Pediatric Cardiac Surgery; Dr. Paul Sponseller, MD, PhD, Chief, Division of Pediatric Orthopaedics, Johns Hopkins Hospital (JHH); Dr. Enid Neptune, MD, Assistant Professor of Medicine, Division of Pulmonary and Critical Care Medicine, JHH; and Gretchen Oswald, MS, CGC, Board Certified Genetic Counselor, JHH, and NMF Mid-Atlantic Chapter Board Member. In addition, doctors from JHH worked in the clinics at Shriner's Hospital, Portland, on Thursday and Friday, diagnosing patients with Marfan syndrome and related disorders at no cost.

Mid-Atlantic Chapter President Amy Speck attended the National Volunteer Network Leadership Training on Friday and gave Powerpoint presentations to the national leaders on the chapter's Golf Tournament and Heart and Soul Concert.

On Sunday, at the Living Successfully Luncheon, the Mid-Atlantic Chapter was honored with the Heartfelt Recognition Award for Outstanding Leadership in Fundraising and Awareness and in Advancing the NMF's mission at the local level. Daniel Speck, youth member of the Mid-Atlantic Chapter, received the "Rising Star" award. This award was presented to Daniel in recognition of his awareness and fundraising efforts over the last four years, raising over $8,000 for the NMF.

NMF Lobby Day 2011, June 23, Washington, D.C.
Six Chapter members visited a total of seven Senate and four House offices to tell their personal stories in relationship to Marfan syndrome, and to convey the message that key work done at the National Institutes of Health (NIH) and the Center for Disease Control (CDC) remain funded. They also asked House Representatives to participate in the new Rare Disease House Caucus. The notable Losartan clinical trial was an anchor topic to urge members of Congress for their support.

Mid-Atlantic Spring Planning Metting, May 15, 2011
Among the topics discussed were the Heartfelt Taste of Home service program, the golf tournament, and the Chapter budget. The meeting was hosted by Faye Morford at her home in Falls Church, VA. Click here to download the minutes of the meeting.

Recent Developments in the Diagnosis and Treatment of Marfan Syndrome, March 12, 2011, 2 pm to 4:30 pm
Expert Speakers: Drs. Hal Dietz and Paul Sponseller
Johns Hopkins University Medical Campus, Baltimore, MD
Dr. Hal Dietz presented an informative overview of the latest research findings, brought us up-to-date regarding the Losartan vs. Atenolol clinical trial, and offered detailed and thoughtful responses to the various questions he took from the audience. Dr. Paul Sponseller delivered an excellent presentation of pertinent and specific points regarding the management of all skeletal issues, and also followed with a very attentive and thorough question and answer period. Thank you so much, to both of our expert speakers, for giving so much of their time and talents to this worthwhile event.
FYI: JHUH Staff Announcements
Gretchen Oswald, JHUH Genetic Counselor and NMF Mid-Atlantic Board Member, introduced us to Libby Sparks, an advanced practice nurse in genetics and a new staff member at Johns Hopkins. Jen Leadroot has moved out of the area and so is no longer with Johns Hopkins.
NMF Mid-Atlantic Chapter Meeting
A brief Chapter meeting followed which included a brief review of activities since our last meeting as well as our first election of officers. Members and guests had an opportunity to mingle and visit during the reception that followed.

NIH Rare Disease Day Exhibit, February 28, 2011, NIH Campus, Bethesda, MD
Lisa Riiber and Faye Morford volunteered their time and support to staff a Marfan syndrome information table and to promote education and awareness of Marfan syndrome and related disorders at this daytime event. Thanks Lisa and Faye for furthering this important aspect of our mission.

Heart and Soul -- Music for Marfan Syndrome, February 27, 2011, 3 pm
St. Mark's Evangelical Lutheran Church, Smithsburg, MD

Amy and Daniel Speck, event organizers
Audra Haddock-Martenot, photography

A warm welcome greeted all guests to St. Mark's for this wonderful afternoon of music, inspirational speeches, and abundant good will to support research for Marfan syndrome and related disorders. About 120 guests filled the church for performances that included several numbers by the St. Mark's Handbell Choir; clarinet, organ and vocal performances by youth members of the Mid-Atlantic Chapter and by family and friends of those affected by Marfan syndrome as well as a closing group song Lean On Me. Each performer was introduced by a member of the Mid-Atlantic Marfan community who also shared a message of their own regarding an aspect of life in relationship to Marfans. In addition to the terrific turnout from the local community of this beautiful area of Maryland, guests came from northern Virginia, greater Maryland, West Virginia and Pennsylvania. A beautiful reception with refreshments provided by St. Mark's Sunday School welcomed everyone to visit and mingle in the church hall, as well as enjoy the music of the German hand organ, thanks to the Henneberger family.

A great afternoon, and a very successful fundraiser, with donations totaling $3,575.

Herald-Mail Online Coverage and Video
Click here to read the online article posted by the Herald-Mail of Hagerstown, MD, serving the local tri-state area of Maryland, Pennsylvania and West Virginia. Be sure to watch the video clip on the left side. It shows several performers, including Daniel, Sarah and Phylicia.

A Thank You to Audra Haddock-Martenot, photographer
Many thanks to Ms. Haddock-Martenot, a professional photographer, who also teaches photography, art and design at Hagerstown Community College. She donated her services and the use of all images at no cost to support the event and the mission.

January 30
NMF Marfan Syndrome Awareness Event -The Lady Terps vs. Longwood
University of Maryland Comcast Center, College Park, MD
Chapter volunteers greeted game goers, distributed helpful materials, and discussed heart health with attendees of all ages. This is the second year for this event. Thanks University of Maryland for giving us this opportunity again this year! Final score: Maryland 84, Longwood 38.

January 30
Hard Times Café College Park/NMF Fundraiser
Hard Times Café, College Park donated 20% of any customer’s bill accompanied by an event flyer, raising $88.87. Added to additional donations of $35, a total of $123.87 was collected for the NMF. Many thanks to Hard Times Café, College Park, and all who donated!

January 15-16
NBC4 Health & Fitness EXPO Washington Convention Center, Washington, DC
A new and fun event this year, Chapter volunteers and friends staffed a booth to spread awareness and distribute valuable heart health materials to health professionals, students, families and individuals of all ages at this two-day, 9:00 am – 5:00 pm event. Volunteers also took time to enjoy visiting many of the EXPO exhibits for themselves. The participation fee for the event was donated by NBC4, Washington.

December 4th and 11th, 2010
Borders Books Gift Wrap/NMF Awareness and Fundraiser
Silver Spring, Maryland
Volunteers wrapped gifts while chatting with shoppers, distributed information, and accepted donations to support the mission.

October 29, 2010
Genetic Alliance (GA) Marfan Publication Project
Several Mid-Atlantic members met at Mary Ahearn's home to discuss their experiences in relation to the syndrome with four Johns Hopkins University genetic counselor graduate students for their publication project, initiated by GA. The students are pursuing their studies in Baltimore as well as on the NIH campus in Bethesda, Maryland.

August 29, 2010
Barbeque Pot-Luck and Meeting
Centreville, VA
Kelly and Rob Berklite hosted a friendly gathering for the Mid-Atlantic Chapter at their home. About 25 members attended, enjoyed the outdoor cookout and pot-luck, each other's company, news, and shared suggestions for future events and projects - an enjoyable time all-around fo everyone.
Click here to see pictures from this event.

August 18, 2010
White House Tour
Washington, DC
NMF Mid-Atlantic members and guest enjoyed this special and memorable treat, arranged by the office of Cong. Steny Hoyer of Maryland, in spite of the driving morning rain!

August 13, 2010
Inaugural Annual Golf Tournament to benefit the National Marfan Foundation
South Riding Golf Club
South Riding, Virginia
Participants were in great spirits, and blessed with a break in the summer heat. A good time, great company, and over $7,000 was raised to benefit the mission.
Click here to see pictures from this event.

July 18, 2010
Genetic Alliance (GA) Art of Listening Award Ceremony
Dr. Hal Dietz, though not able to attend, was honored with the GA Art of Listening award. Gretchen Oswald and Mary Ahearn attended and accepted the award on his behalf.

July 15, 2010
Gene Screen: A Night of Film on Health and Genetics
A Genetics Alliance annual film event, in coordination with their annual conference, was held at the E Street Cinema in Washington, DC. Local Mid-Atlantic members and several members of our national staff were on hand to view several award winning short films bringing awareness to genetic health. In My Hands: A Story of Marfan Syndrome, by Ann Reinking, was one of the films being honored and screened.

June 30, 2010
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
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 1st 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. 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 on 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 non-profit 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 contribute 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 were 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, 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 officer or board member. Your interest and involvement is most welcome. Scroll up to “Meet Our 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 the 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 along with 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.
Click here to view photos from the Maryland vs. FSU event.