You may have noticed that this Winter 15 issue of our newsletter is arriving later than usual this year. I was unexpectedly taken ill, and lost about a month of time. I feel fortunate to be almost back to normal and ready to get this issue rolling! Meanwhile, it’s the end of March and I’m still waiting for the first flowers to bloom. Instead, what do I see outside of my window??? Snowflakes! I take heart in knowing that by the time you are reading this the warm weather will be here.

My daughter Hannah (classic) is about to turn 21! How did this happen? This community has been a part of my life for 21 years, and I don’t know where I’d be without it.

I’m grateful to those who were willing to share their personal stories with us. For me, those pieces are the most gripping and meaningful. It gives us all the opportunity to learn how others are managing MSUD, where ever they live.

In this issue you will be introduced to our new Advocacy chairperson, Jordann Coleman, and also hear about the efforts of the Jones’ family and their success in raising funds to help meet the needs of our members. I hope these articles will inspire you to step up and participate in any way you can.

MSUD continues to be a focus of research. In this issue I review 3 papers published over the past few months. One tells us the status of MSUD in Brazil, another informs us of the results of an experiment with carnitine supplementation, and the third reviews the case of a successful liver transplant with mom as donor.

We no longer have a “Diet Wise” editor providing recipes using lo protein foods, but Dana Angelo White has provided a couple of recipes using healthful foods naturally low in protein and also shares with us information about her newly published cookbook. More recipes can be found online through the NBS Connect website:

Finally, we are grateful for the continued support we receive from Nutricia and Vitaflow.

All my best,

Karen Dolins
Mom to Hannah, Classic MSUD, age 20


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

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Metformin As A Possible Therapeutic Agent In The Treatment Of MSUD

The MSUD Family Support Group has provided funds to Buck Institute for its preliminary studies investigating metformin

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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.

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In The Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

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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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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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A Child's Life

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