Every year, we hold an annual conference which provides people living with Marfan syndrome and related disorders, and their families, an opportunity to learn about these conditions from the country’s medical experts, hear about the latest research, and connect with other people who are on the same medical journey.
We offer specialized programs and workshops for people of every age, including children, teens, young adults, and older people. In addition, we offer conference attendees free medical assessments, which we make possible in conjunction with the medical institution that co-hosts the meet with us and our dedicated medical advisors, who are the leading doctors on Marfan syndrome and related disorders from across the U.S. This is a unique offering that is truly a benefit for those who do not have access to expert medical care near their home or lack healthcare coverage. And, we offer scholarships for first-time conference attendees.
2016 Conference Highlights:
- We launch the conference on Friday, August 5th with our first-ever Conference Walk for Victory. Attendees gather, at a park near the Mayo Clinic, where everyone can enjoy fun activities and then take a short walk back to the welcome dinner.
- On both Saturday and Sunday, adult attendees hear the latest information on diagnosis, treatment, and research during the General Session, and in small group workshops led by Marfan and related disorders medical and social service experts.
- All adult Saturday workshops will include a planned presentation based on the questions you submitted on your registration form. There will be time for additional questions after the presentation.
- An evening relaxation program featuring deep effortless meditation to reduce anxiety, stress, pain and depression.
- A new Creating Connections luncheon on Saturday provides opportunities for attendees to network with others through planned activities.
- Young adults (19-25 years), have the opportunity to participate in the same activities as all adults, but with a special workshop track specifically designed for this age group. Fun activities that are part of the young adult program are a dinner and a concert, a separate hospitality space with planned activities hosted by the members of our Young Adult Council and a “adulating successfully luncheon”.
- Teens (13 to 18 years) have a complete program designed for their needs and interests. They can ask their questions at a Q&A breakfast with expert doctors, then attend small group workshops. On Saturday teens take a to the Mall of America, the largest mall in North American, where they will spend the day at Skydeck, which features a bowling alley, arcade games and billiard tables, and then they can challenge themselves in the dazzling Mirror Maze. Evening activities include a comedy workshop with Andy Erikson, a finalist in NBC’s Last Comic Standing and who has Marfan Syndome, dancing, games, and more.
- Children (5 to 12 years) take a field trip to Rochester Art Center for a fun filled day of creating and learning about art. Children have the opportunity to ask questions about Marfan syndrome and related disorders at a kids’ Q&A session with expert doctors, and then enjoy games, arts & crafts, and more
- Spanish workshop for Spanish speaking attendees.
- New additions to the conference for everyone include a Saturday evening program highlighting comedian Andy Erikson and talented members of our community. Sunday’s closing luncheon will feature a tall size fashion show featuring our very own teens as models.
Free Patient Health Assessments
Conference attendees who don’t have access to quality medical care in their home area due to lack of knowledgeable doctors and/or lack of healthcare coverage can apply for a free patient health assessment. This opportunity is for people who are seeking a diagnosis or have a specific Marfan or related disorder treatment issue. Patient assessments take place on Thursday, August 4, and Friday August 5, 2016. Echocardiogram and eye appointments take place on Thursday and all other appointments take place on Friday. Click here to download the health fair application.
Scholarships are available for first-time Marfan Foundation conference attendees who live in the U.S. Scholarships are typically partial and usually include one adult registration and two hotel nights. Children and teens are always free of charge (please note the deadline). Apply for a scholarship by April 15, 2016. Click here to apply now.
Important Dates and Deadlines
- April 15, 2016 - Conference Scholarship Application Deadline
- May 15, 2016 - Free Patient Health Assessment Application Deadline
- June 1, 2016 - Children, Teen, and Young Adult Programs Registration Deadline
- June 1, 2016 - Early Registration Deadline
- July 7, 2016 - by 6:00 PM EST – Kahler Grand and Marriott Hotel Registration Deadline