Biennial MSUD Symposiums

 

2022 Symposium Cancellation Announcement

 

We regretfully inform you that the MSUD Symposium planned for August 4-6 in Lancaster, PA has been cancelled.

This decision was not arrived at lightly. The MSUD Family Support Group Board of Directors remains concerned about our ability to safely bring our community together. Out of concern for the health and well-being of all and after weighing our options, we decided that it is in the best interest of this community to cancel this in-person event. At this time, we do not know when or where the next symposium will take place but will update you when that information is available.

In the interim, we encourage you to stay connected and continue to support each other as you have been doing during these difficult times. We have held several webinars over the past year including a cooking event and an information session regarding our Patient Registry. We will continue to plan events that can be attended from the comfort and safety of your homes.

Our next event will be an online meeting with the MSUD Family Support Group Board of Directors. We plan to update you on FSG activities as well as answer any questions you may have. An announcement regarding the date and time of that update will be made soon.

 

 

Parent interest in support and information prompted the first MSUD Symposium for families and professionals in 1982. It was at this first Symposium that the families discussed the need for an organized support group. Symposiums are held biennially, are well attended, and are usually planned by the families with the help and support of their medical clinics. About 50% of the Family Support Group membership attended the 2018 symposium even though cost and travel impose significant barriers to attendance.

The most recent symposium, held near Pittsburgh, PA  in June, 2108, was attended by 232 people. Attendees were from 22 of the 50 United States and 7 countries and included 47 individuals with MSUD ranging in age from 7 months to 47 years and 15 people that had undergone liver transplantations. Also in attendance were medical professionals who are:

  • Engaged in the daily care of MSUD patients and families.
  • Conducting research on the causes and potential avenues of treatment and cure for MSUD
  • Providers of necessary medical foods necessary for MSUD patients.

Presentations from the 2016 and 2018 symposiums can be viewed by clicking the links below.

Aside from research, the biennial symposium is the single most expensive activity funded by the MSUD Family Support Group. Please consider a donation so that we can continue with this high quality and very worthwhile experience for the MSUD community.

 

View Presentation Videos From The Most Recent Symposiums