Looking for other community events? Check out Community Connections Events Calendar
2023 Summit Recordings are now available on our JdVS YouTube Channel!
In the summer of 2023, the JdVS Foundation brought families together for the first JdVS Family and Medical Professionals Summit.
If you are fortunate enough to know any one of our uniquely special individuals affected by JdVS, you know what a magical and joyous experience the event was. This three day conference brought together the JdVS Community in an inclusive, hope-filled environment to focus on our shared journeys. Time was spent sharing personal stories, bringing awareness to our rare disease, and discussing how we as a community can help drive research to better the lives of those living with JdVS.
Speakers
The following medical professionals and researchers participated in the 2023 JdVS Family and Medical Professionals Summit.
Members of the JdVS Medical Advisory Board:
- Dr. Bert de Vries
- Dr. Herb Lachman
- Discussion about the May 2023 article in the American Journal of Medical Genetics authored by Dr. Monica H. Wojcik, Dr. Cynthia Curry and other researchers: Jansen-de Vries syndrome: Expansion of the PPM1D clinical and phenotypic spectrum in 34 families
Dr. Richard G. Boles shared information on Cyclic Vomiting Syndrome
Program
FRIDAY, JULY 28
3:30 – 5pm: Pool Outing (at another hotel)
5 – 7 pm: Registration & Welcome Reception
SATURDAY, JULY 29
8 – 9 am: Breakfast
9 am – 12:30 pm: JdVS Foundation Welcome and Medical Professional Speakers + Q&A
12:30 – 1:30 pm: Lunch
1:30 – 2:30 pm: Medical Professionals Q&A + Community Networking
2:45 – 3:45 pm: Special Needs Trust & Financial Planning Presentation with Ryan Platt from A Special Needs Plan
3:45 – 6 pm: Downtime (pool, tour Charlotte on your own)
6 – 10 pm: Dinner with Special Program followed by a Silent Disco Celebration
SUNDAY, JULY 30
8 – 9 am: Breakfast
9 am – 12 pm: JdVS Foundation Presentation + Community Connection Activity + Roundtable Drop-Ins
12 pm: Bagged lunches available
ACTIVITIES FOR CHILDREN
On Saturday and Sunday, we offered / child activities room provided for individuals with JdVs and siblings with licensed childcare providers. On Saturday, there was also be music therapy and pet therapy.
Volunteer
We are always looking for volunteers to help! If you are interested in volunteering for future JdVS events, email jdvsyndromefoundation@gmail.com.
Questions?
Email us at jdvsyndromefoundation@gmail.com
