|
Programs for Children, Teens and Young Adults
|
Children and teenagers with Marfan syndrome and related disorders, their siblings and friends can take part in special age-appropriate programs designed just for them. Young adults (20 and 30-something) are invited to get together for informal get-togethers too.
Children's Program Teen Program Young Adults 20 to 30-Something Children's Program Special age-appropriate programs for children ages 5-12 are offered during the conference. Activities include fun and informative indoor and outdoor events suitable for everyone, including youngsters with special medical issues. Unaffected siblings and friends are also welcome. Friday, August 7
Meet other children ages 5-12 at the official conference Welcome Reception.
Saturday, August 8
Have fun visiting the Quarry Hill Nature Preserve, enjoy a magic show and have fun together watching movies, playing games and doing art projects.
Sunday, August 9
Dr. Jessica Davis, M.D., geneticist from New York-Presbyterian/Weill Cornell Medical Center, will answer your questions about Marfan syndrome and related disorders.
IMPORTANT NOTES
Children participating in the program must be accompanied to conference by a registered adult.
Registration deadline for children: June 15
Adults with registered children will receive a packet of information including the full schedule of events for children prior to the conference
Teen Program
The program offers special activities for teenagers ages 13-18 with Marfan syndrome and related disorders and their siblings and friends. Teens attend the Welcome Event with their parents and then take part in a program designed just for them including medical sessions with Marfan experts, group discussions, local excursions and fun events.
Friday, August 7
Following a teen welcome session, learn about self-image and photography from acclaimed photographer Rick Guidotti, and get your weekend photo project. Attend the official conference welcome reception then spend the evening sharing experiences with in a Living Successfully program.
Saturday, August 8
Start the day with breakfast with Dr. Hal Dietz, the renowned Johns Hopkins Marfan syndrome researcher, following by a session focusing on Coping with Loss. Enjoy an afternoon boat ride on the Mississippi River, have dinner together at a local restaurant, and spend the evening playing games and dancing.
Sunday, August 9
Learn How to be Your Own Advocate from NMF board member Chris Heaney, enjoy game time, and take part in art projects. Wrap it all up at the adult Living Successfully session and luncheon.
IMPORTANT NOTES
Teens participating in the program must be accompanied to conference by a registered adult.
Registration deadline for teens: June 15
Adults with registered teens will receive a packet of information including the full schedule of events for teens prior to the conference
Young Adults 20 to 30-Something
If you are in your 20s or 30s, meet your peers at the Friday evening Welcome Reception. Join in activities for this age group and take part in the Young Adults support group on Sunday, 11:30 AM – 12:45 PM.
Make sure to select the option to attend the 20-30 something program when registering and we will send you additional details as we get closer to conference.
|
