:: National Marfan Foundation ::

The first day of Conference started with a presentation about the Image-ination Photo Contest. With the promise of a flip video camera for the winning photo, cameras started snapping quickly. Following that, there was a really fabulous “bingo” ice-creaker where everyone had to find people for their squares who matched certain characteristics. The room was quickly filled with introductions and questions that helped people get to know each other. Who knew that several people shared a birthday.

2nd Place Photo: Image-ination Photo Contest, Together We Can Reach New Heights

Following the all-Conference Welcome Event, the teens got together for the Living Successfully Discussion. We were thrilled to be joined by Steve Marpman, Emily Neustadt, Lou Arias and Cheryl Williams who talked about their life with Marfan syndrome, challenges and successes. Several of the teens shared their own stories too. Others asked questions. The group laughed together, cried together and came together as various topics were raised. To further the conversation, we split into groups by gender to provide the opportunity to discuss male and female specific concerns. As always the group amazed with their boundless compassion and dedication to supporting each other. With some loud laughter the formal program came to an end for the evening and every one retired to their rooms to ensure a good night’s sleep. (We can pretend can’t we?)

Saturday, featured breakfast (and coffee!) with Dr. Hal Dietz who gave up a significant chunk of his morning to answer medical, research and social questions. Following, teens had the opportunity to select two differnt small group discussions they wanted to attend including coping skills, transitioning to adult care, Marfriends and body system specific discussions. With expert presenters from the NMF's Professional Advisory Board (thank you to all of them!) the sessions were extremely helpful. After some more picture-taking it was time to board buses for the field trip! An hour later we were at the “Oil Ranch” munching on some delicious food and picking what activities we wanted to do. The inflatable water slide (no idea so many people could fit on it), slip n’ slide (who did it fastest?) and pool were huge hits and the pictures are proof of the rollicking good time! It was a tired bunch that boarded the buses to come back to the hotel, but that was nothing some down home Texas cooking couldn’t solve!

After enjoying dinner, it was time to dance, and dance we did! Safe to say there has never been a dance quite like this one and the ice cream sundaes and board games helped ensure a fun night for all! There are certainly stories to be shared, but those might be best kept offline. As the final song came to an end (despite complaints and pleas for it to go on longer) everyone went back to their room and went to sleep. (Right?)

Sunday, commenced with a session on volunteering with the NMF. Several in the group shared stories of things they had done in their own community and many ideas were bantered about. Near the end of the session, NMF staff member Jonathan Martin and teen group co-leader, Benjamin Weisman announced the Teen Fundraising Challenge and the trash-talking and idea-sharing began. Following this, Chris Heaney and teen co-leader, Maya Zimmerman led a discussion on how to talk with your doctors and be your own advocate. Following evaluations and game-time we all headed back downstairs to the all-Conference Farewell Luncheon where fellow teen, Peter Donato, was featured on the Living Successfully Panel. It was a great weekend filled with information, laughter, honesty, advice and fun. We all left with a better understanding of who we are, some new friends and the knowledge that some very embarrassing photos no doubt exist!

NMF Conference 2009 Recap

Maya and Ben Getting Pied

This year’s conference was the best yet! Teens from four different countries descended on Rochester, MN for an unforgettable weekend of everything Marfan and related disorders. Friday afternoon, we kicked off conference with a workshop led by Rick Guidotti founder of Positive Exposure. He introduced the Image-ination Photo Contest, which challenged everyone to take photos throughout the weekend which show the beauty of diversity in Marfan syndrome and related disorders. Teens who attended the Conference can submit one photo they took to the contest. The winner will receive a Nikon digital camera. Next, was the state fair themed Welcome Reception for all Conference attendees. Ben and Maya got pied in the face at this event. Friday night ended with one of the annual highlights: the Living Successfully Panel and Gender Breakout Sessions.

Rick Guidotti, Positive Exposure, Announcing the Photo Contest

Saturday morning, we had breakfast with Dr. Hal Dietz, a leading Marfan and related disorders expert. He answered our questions on Marfan, Loeys-Dietz, and Ehlers-Danlos, everything from “Can we ride rollercoasters” to “What kind of surgeries might we need?” Next, there was a workshop on Coping with Loss. The teen Marfan and related disorders community lost two dear friends this year. We shared memories and feelings about their loss. We also talked about the loss of the idealized self that takes place after a person is diagnosed. That afternoon we took an old fashioned paddle boat ride on the Mississippi River with pizza and dancing. Our trip ended up being a lot longer than planned because the river bridge got stuck, trapping us on the wrong side! That night we had a nice Italian dinner out on the town at Victoria's Restaurant. The night ended with a dance, games, and hanging out by the pool.

Breakfast with Dr. Dietz

Paddle Boat Trip

After Dinner Dance

Sunday morning, veteran NMF volunteer Chris Heany spoke with us about being our own advocates. We spent the rest of the morning playing games and hanging out. All Conference attendees came together once again for the last event, the Farewell Luncheon and Living Successfully Panel. The Living Successfully Panel featured one of our teens, Laurel Giacone. Laurel also received the Rising Star award at the luncheon.

NMF President and CEO Carolyn Levering giving Laurel Giacone the Rising Star Award

We had a great time and can’t wait for the Houston Conference in July 2010!

NMF Conference 2009: Teen Program Slideshow

A First Person Account of Conference by teen, Peter Donato