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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: www.nbsconnect.org

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

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.

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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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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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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.

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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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Galen Carrington Classic MSUD age 27

Galen Carrington is a 27 year old Indiana resident who has classic MSUD. He underwent liver transplantation 5 years ago at Children’s Hospital

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Transform

A Child's Life

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