|MSUD SYMPOSIUM 2016|
|Written by Sandy Bulcher, VP MSUD Family Support Group and Symposium Coordinator|
MSUD Symposium 2016 was held at the Embassy Suites Brier Creek in Raleigh, NC on June 23- 25. The 195 people that attended the three day event were from 21 of the 50 United States and 8 countries. Attendees included 47 individuals with MSUD ranging in age from 7 months to 47 years and 5 people that had undergone liver transplantations.
A reception was held Thursday evening. During that time, families enjoyed renewing old friendships and meeting new families. Friday was a day fi lled with interesting and inspiring speeches. Dr. Holmes Morton shared his perspectives on the progress that has been made in treatment from 1986-2016. Dr. Brendan Lee discussed the results of the Sodium Phenylbutyrate study that he and his colleagues conducted at Baylor. Dr. Robert Steiner of Acer Therapeutics described the company’s plans to follow up on Dr. Lee’s work and continue study of Sodium Phenylbutyrate as a treatment for MSUD. Dr Xinlin Hou from Beijing, China shared the challenges that clinicians face in diagnosing and treating children with MSUD in China.
Herb Foster, MSUD parent from Massachusetts, presented a check for $248,000 in honor of his son Scott C. Foster to the MSUD Family Support Group board. These funds will be used to further MSUD research. We are grateful to Herb for all of his fundraising eff orts and this very generous donation.
The afternoon began with Dr. Holmes Morton who discussed his concerns regarding diet, crisis and metabolic imbalances post liver transplant. Next, the fi fteen families attending the symposium for the fi rst time introduced themselves. We were very fortunate to have Dr. James Wilson from the Orphan Disease Center in attendance.He presented next on promising research in the areas of gene replacement and genome editing. The young adult panel followed and included presentations by Seth Webb, Nikolai Rudd, Amanda Alsada, Elan Geff en, and Trey Black. This was a special time, as MSUD parents had the opportunity to ask questions of the young adults and learn from their experiences. A group photo of those with MSUD was taken prior to dismissing for dinner.
That evening, many symposium attendees enjoyed social time together. There was entertainment for all including a climbing wall, obstacle course, infl atable slide, corn hole games, and both regular and low protein ice cream. Everyone had a great time interacting and getting to know each other better.
Saturday morning began with Dr. Peter McGuire’s interesting presentation on his ongoing study at the National Institutes of Health (NIH) on metabolism, infection and immunity in patients with inborn errors of metabolism . Following Dr. McGuire, Julie McClure, a metabolic dietitian from UNC Chapel Hill, presented practical information about how to manage the MSUD diet without spending a lot on specialty low protein items. The symposium concluded with MSUD Board President, Ivan Martin, sharing his vision for the support group and introducing new board members Herb Foster, Ed Fischler and Jennifer Saunders who will replace Anne Fredericks and Amy Jones. Thanks Anne and Amy for your years of service to the board and the MSUD community.
Special thanks to United Service Foundation for their generous donation which supported the travel expenses for some of the attendees. Thank you to our other sponsors, vendors and donors. Watch for the date and location of MSUD Symposium 2018 in upcoming newsletters and on our website.
|Last Updated on Thursday, September 22 2016 10:58|