Last December Wayne Brubacher informed the MSUD Board of Directors that he was stepping down as president. With some reservation, we accepted his resignation. Please join us in thanking Wayne and Joyce for their many years of service. Although they want to be relieved from the responsibility, we will not be allowing them to disappear from the scene! We plan on keeping them involved, especially during the symposiums.

On June 27, the MSUD Board of Directors met at the Embassy Suites Hotel in Pittsburgh, Pa. The location was chosen for two reasons: it was a central location for travel and also allowed us to check out the hotel and the area restaurants as a possible future symposium location. At this meeting, the Board was re-organized with the following officers either installed or retained: Ivan Martin-President, Sandy Bulcher-Vice President, Dave Bulcher-Treasurer, and Anne Fredericks-Secretary. Joined by board members Amy Jones and Karen Dolins, we focused our discussion on future directions and long range planning for the MSUD Family Support Group. We highlighted the following goals:
  • Become more active and more visible in the genetic disease world
  • Improve the efficiency of our communication (see Editor’s Note)
  • Investigate potential research projects to support
  • Investigate the feasibility of helping other countries with a significant MSUD population set up their own support groups

Please contact us if you have any suggestions for the Board and how we could serve you better. I‘m looking forward to seeing you next year at the Symposium.

From The Editor

Hello to my MSUD family! The power of this family hit home this summer, when Hannah (Classic MSUD age 23 years) and I visited Israel.

Read More

20th Annual White Horse Beach Charity Golf Tournament

On July 29, 2017 Charlie O’Rouke and his committee held the 20th Annual White Horse Beach Charity Golf Tournament.

Read More

My Trip To Israel

I met Avi, Dikla, and Tamar Starr last year at the MSUD Symposium in Raleigh, NC. Tamar, classic MSUD, was 2 ½ at the time, and they invited me to come to Israel and stay with them for a year.

Read More

Indigo Charlie Mays - Variant MSUD Age 4

Meet our girl Indigo Charlie Mays. After a smooth pregnancy and delivery, she was born on July 21st, 2013 in Seattle, WA.

Read More


As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

Read More

Cambrooke Foods Hosts Local Event

Cambrooke has been doing cooking demonstrations, social meet ups and educational events for patients, their families and the clinician’s that support them for many years.

Read More


A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates