July 28–30, 2023
2023 JdVS Family and Medical Professionals Summit
Charlotte, North Carolina
In the summer of 2023, the JdVS Foundation brought families together for its first JdVS Family and Medical Professionals Summit: a three-day, inclusive gathering focused on shared stories, awareness, research, and community connection.
Speakers
Medical professionals and researchers participated in the 2023 summit, including members of the JdVS Medical Advisory Board: Dr. Bert de Vries and Dr. Herb Lachman. The program also included discussion of the May 2023 American Journal of Medical Genetics article on the expanding Jansen-de Vries syndrome clinical and phenotypic spectrum, as well as information about Cyclic Vomiting Syndrome from Dr. Richard G. Boles.
Program
Friday, July 28
- 3:30–5 p.m.: Pool outing
- 5–7 p.m.: Registration and welcome reception
Saturday, July 29
- 8–9 a.m.: Breakfast
- 9 a.m.–12:30 p.m.: JdVS Foundation welcome, medical professional speakers, and Q&A
- 12:30–1:30 p.m.: Lunch
- 1:30–2:30 p.m.: Medical professionals Q&A and community networking
- 2:45–3:45 p.m.: Special Needs Trust and financial planning presentation
- 3:45–6 p.m.: Downtime
- 6–10 p.m.: Dinner, special program, and silent disco celebration
Sunday, July 30
- 8–9 a.m.: Breakfast
- 9 a.m.–12 p.m.: Foundation presentation, community connection activity, and roundtable drop-ins
- 12 p.m.: Bagged lunches available
Activities for children
Child activities were available on Saturday and Sunday for individuals with JdVS and siblings, with licensed childcare providers. Saturday also included music therapy and pet therapy.
Volunteer
Interested in helping with future JdVS events? Contact the foundation to volunteer.