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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.

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Our Story

On April 23 2015, our precious firstborn son Eliyahu Tuvia was born in Jacksonville, FL. All seemed well and we took our bundle of joy home.

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Fundraising

In the 2016 survey of the membership of the MSUD Family Support Group, research for improved treatments and potential cure was rated “most important” by 90% of the responding members.

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MSUD Awareness Day

Now more than ever before we are hearing about National Awareness Days which are set by organizations or the government to bring attention to issues of importance.

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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.

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NBS-MSUD Connect: Advancing MSUD Research And More

NBSCONNECT.ORG

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

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Transform

A Child's Life

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