Karen Dolins, EdD, RD, CDN
Mom to Hannah, Age 13

I hope you enjoy this issue of the newsletter. It is meant to provide updates in research and treatment, stories from member families, and practical information such as diet tips and new food products.

A new newsletter has its genesis as soon as the previous one is published. Requests are made to professionals and families alike for contributions. As everyone is busy, it takes quite awhile to gather enough information to publish. But the result makes it all worthwhile.

We are a family. I still remember the first newsletter I read after my daughter Hannah was diagnosed in 1994. It allowed me to feel connected to a group of people, to know that I was not alone, and that others would help me.

This issue features moving stories from members. The heartwarming story of the Burkholder family, with 12 children, 6 with MSUD puts into perspective the issues those of us face with 1 MSUD child. The magical story of Elan Geffen’s trip to Israel, and the humorous face that Jordan Bulcher puts on life with his disease will touch us all.

We have a peek into new research being conducted at Mt. Sinai Medical Center in New York, which meshes with a dietitian’s perspective on the importance of including fruits, vegetables, and a source of omega 3 fatty acids in the MSUD diet.

Meanwhile, please keep in mind that "it takes a village." You may have noticed that our website has not been kept up to date. You probably don’t realize that Sandy Bulcher practically single-handedly puts on our semiannual symposium, a feat that is usually accomplished by a dedicated committee of people. You will read the touching story of how several of our members have given of themselves, my daughter Hannah and Kay Larson in particular, to provide formula for families in the Philippines who otherwise would have gone without.

As you read through this issue of the newsletter, please don’t be a bystander. Be a participant. We need help with the symposium, with our website, and with a myriad of other tasks that are necessary to keep us a vibrant organization.

As winter turns to Spring, our children are growing up, mine included. Come December, we’ll be a family of teenagers as my twins turn 13. With growth comes independence. Our daughter Hannah (Classic MSUD - almost 14) is preparing to go away to camp for a full summer! She will be nearby so she can get to the hospital if necessary and my husband Jerry and I will be delivering her formula weekly and monitoring food logs, but it’s definitely a milestone for us. Since her siblings began going away to summer camp, she has longed to do the same.

Tell us about your families. Help us with our organizational needs. We inspire each other to reach beyond our perceived boundaries.

I want to help out, but I don’t know how

Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy and fundraising efforts.

Read More

NBS-MSUD Connect: Advancing MSUD Research And More


Rare disease registries have received attention in recent years because of the many ways in which they can benefit the rare disease community.

Read More


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

Read More

From The Chairman’s Desk

On July the 21st the MSUD Board of Directors traveled to Bethesda, Maryland for our annual Board meeting. We stayed at the Hyatt Regency in Bethesda.

Read More

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


A Child's Life

Subscribe to our mailing list

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