NMF Celebrates Silver Anniversary Conference with Education, Warmth, and Community 
Nearly 500 individuals, families and medical professionals gathered in Rochester, MN for the NMF's 25th Annual Conference, August 6-9, 2009. Hosted by the world renowned Mayo Clinic, the Conference provided attendees with expert medical care, a welath of medical information, and the camaraderie of a vast support system that will help people throughout the year as they cope with Marfan syndrome and related disorders. - Conference participants came from all corners of the U.S., and from Canada, Australia, New Zealand, Switzerland, Equador, Venezuela, and South Africa.
- There were over 80 teens and 60 children, ages 5-12, who participated in concurrent programs for their age groups.
Medical Testing and Patient Assessments A Wonderful Opportunity to Have Fun and Connect with the Community A Wealth of Information Teen Spirit (Teen Program, 13-19 year olds) Kids with Heart (Children's Program, 5-12 year olds) NMF Scholarship Funds Assist 61 Families See You Next Year in Houston, TX! View the 2009 NMF Conference Brochure Medical Testing and Patient Assessments Over 80 individuals took advantage of the invaluable opportunity for medical testing, echocardiograms and eye tests, and private appointments with Marfan and related disorders experts from across the country on Thursday and Friday, a free service sponsored by the Mayo Clinic. Each individual had one to four seprate appointments with specialists depending on their personal medical needs. Every patient was provided with a written report to take back to their local doctors for follow up care. Social workers were available to answer questions and provide counseling for those coping with a new diagnosis, learning they require surgery, or simply needing a person to sit with them and listen. Medical testing and patient assessments are offeredevery year at the NMF Conference free of charge and provide access to vital health care for those most in need--people with little or no health insurance, financial constraints and/or limited specialty care in their home area. 
A Wonderful Opportunity to Have Fun and Connect with the Community The official Conference kicked-off Friday evening with a special state fair themed Welcome Reception organized by the NMF's Heart of Iowa and Twin Cities Minnesota Chapters. This fun-filled event included games for children, a pie throwing contest for kids of all ages, therapy bunnies from a Minnesota animal therapy group, displays by local artisans, and the opportunity for people from around the world to taste local Midwest state fair foods--fried twinkies and all. 
Saturday evening, adult participants attended the annual Awards Dinner. Each year three awards are given out at this sit down dinner, the Heart of the Matter Award, the Priscilla Ciccariello Award, and the Antione Marfan Award. The Heart of the Matter Award is given to an idividual or group of people who prmote education and awareness of Marfan syndrome. This year the Dostalik Family from Urbandale, IA received this award. The Priscilla Ciccariello Award, named for the founder of the National Marfan Foundation, is given to an individual who has dedicated to their life to the NMF mission. This year the award was given to Bruce Klein, President of the NMF Northern Illinois chapter and former member of the NMF Board of Directors. The antione Marfan Award goes to an outstanding physician or researcher dedicated to the Marfan and related disorders community. This year the award was given to Duke Cameron, MD, cardiovascular surgeon, Johns Hopkins Hospital. The evening also featured key note speaker Amy Ritter, John Ritter's widow, who spoke about education and awareness of aortic dissection. The Conference ended Sunday afternoon with the Living Successfully Luncheon. NMF volunteers from around the country were recognized for organizing education and awareness programs, providing social support to members of the community, leading Conference workshops, advocacy, and fundraising. Five members of the Marfan and related disorders community from differerent age groups shared their life experiences living with Marfan syndrome and related disorders and answered questions from the audience. In between, Conference attendees connected with friends-new and old-during meals, break times and while strolling the exhibit hall including the popular Heartmart raffle. 
A Wealth of Information Saturday morning, adult participants attended the General Session with presentations by an impressive line-up of medical experts on Marfan syndrome and related disorders. Speakers included; NMF Professional advisory Board members Dianna Milewicz, MD, PhD; Peter Byers, MD; Paul Sponseller, MD; Heidi Connolly, MD and Hal Dietz, MD; as well as Thoralf M. Sundt, MD, cardiovascular surgeon from Mayo Clinic. Saturday afternnon, adult participants chose from more than 30 Medical Workshops that provided in-depth discussion on topics such as genetic testing, cardiac concerns, non-surgical approaches to dural ectasia, and much much more. Medical Workshops were lead by some of the country's leading experts, including members of the NMF's Professional Advisory Board, medical professionals from the prestigious Mayo Clinic, and invited guest physicians. Sunday morning, adult participants chose from twenty-six Psychosocial Workshops/Support Groups. These sessions provided a unique opportunity to attend small support groups where people could connect with others in similiar situations as themselves such as; Support Group for Mothers, Support Group for Parents, Support group for Couples, Support Group for Unaffected Spouses, etc. Additionally, workshops that address the daily struggles of living with Marfan syndrome or a related disorder were offered and included topics such as Transitioning to Adult Care, Gentle Chair Yoga, Preparing for Surgery, Dealing with Your Child's School, Health Insurance and Disability, etc. How do these programs help? Imagine your child is facing aortic surgery. Twenty conference participants chose to attend a workshop where they had the opportunity to ask questions and discuss issues with Duke Cameron, MD (Johns Hopkins), Joseph Coselli, MD (Baylor College of Medicine), Thoralf Sundt, MD (Mayo Clinic) and Joseph Dearani, MD (Mayo Clinic), four of the country's leading cardiovascular surgeons with expertise in treating Marfan syndrome patients. There is no other setting where the parent of an affected child can have access to these doctors these prominent doctors at the same time. 
Teen Spirit (Teen Program, 13-19 year olds) A first person account by Maya Zimmerman, Teen Leader 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 were able to submit one photo they took to the contest. The winner received a Nikon digital camera. Next, was the state fair themed Welcome Reception for all Conference attendees. Teen leaders, 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. 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. NMF volunteer Chris Heany spoke with us Sunday morning 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. We had a great time and can't wait for the Houston Conference in July 2010! View Teen Program Slideshow 
Kids with Heart (Children's Program, 5-12 year olds) The five to twelve year olds laughed, learned, and bonded while they went on field trips, watched movies, did art projects and met with Jessica Davis, MD. Saturday morning, the kids went to the Quarry Hill Nature Center where they were divided into groups by age. The younger children participated in the Catching Critters Program while the older children were Hangin with the Birds. The younger children caught insects, explored a cave, went fishing with old fashion fishing poles and played games while the older children trapped and released birds, learned about compesses through a scavenger hunt game, and went on a nature walk. Back at the hotel in the atternoon the kids were entertained by magician, Bob Miller. After the magic show the kids participated in a balloon animal workshop where they learned to make their own balloon animals. They children wrapped up the day with ice cream and movies in the evening. Sunday, the children met in small groups by age with NMF Professional Advisory Board Member, Jessica Davis, MD. Dr. Davis talked with the children about living with Marfan syndrome and related disorders and allowed them to ask her any questions they wanted to. While each gropup met with Dr. davis the other groups were playing board games and doing art projects. The children wrapped up the Conference with a scavenger hunt through the Mayo Clinic buildings and grounds. Then they joined their parents at the Living Successfully Luncheon where four children received Kid with a Heart Awards for education, awareness and fundraising activities they organized throughout the year. 
NMF Scholarship Funds Assist 61 Families The NMF provides scholarships to first-time Conference attendees based on finacial need. This year approximately $20,500 in Conference scholarships were awarded to 61 families which included 20 children and teens. Many families were seeking information fro Marfan experts; others were interested in attending the Conference so that their children could meet other people living with Marfan syndrome and related disorders like them. Your donation to the NMF Conference Scholarship Program can help: individuals and families who don't have access to care to see Marfan experts at the Conference Clinic, a child who has never met another person with Marfan syndrome to bond with dozens of other kids who understand what they are going through, people learn about Marfan syndrome from experts so they can make important treatment decisions, and much much more
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See You Next Year in Houston, TX! We hope to see all of you next year at the Conference in Houston, TX, July, 8-11, 2010. The Conference will be co-hosted by Baylor College of Medicine and the University of Texas Health Science Center at Houston. Conference activities will take place at the Houston Intercontinental Hotel. Interested in volunteering at the 2010 Conference? Contact the Manager of Volunteer Development at kjeffers@marfan.org or 1-800-8-MARFAN ext. 11.
View the 2009 NMF Conference Brochure
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