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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. The trip came about because Hannah was invited to stay with Avi and Dikla Starr, who attended our Symposium last year with their daughter Tamar (Classic MSUD age 3 ½ years). She spent 5 weeks with them and traveled throughout Israel to visit other MSUD families (see Hannah’s article describing her trip on page 6). I joined her for the last 11 days. We received warm welcomes from everyone we met. Perhaps most poignant, we met a couple from India who were in the country when their son Krish (classic MSUD age 4 months) was born. Knowing that treatment in India is poor, they were able to extend their visa and hope to get a liver transplant.

In addition to editing the newsletter, I also serve on the Board as Secretary and have been working to expand our advocacy efforts. Please read the articles describing these efforts and learn how you can help. Also included are research updates and plans for fundraising, which will enable us to support promising research projects.

Thank you to Susan Mays, Sarah Dworkan, Jody Carrington, Hannah Dolins, and Anne Fredericks for your family stories. Remember, we all enjoy hearing each other’s stories and important events. Please don’t hesitate to contact me at karen.dolins@yahoo. com if you’d like to tell us yours.

Finally, a big thank you to our advertisers Cambrooke Foods, Vitaflo, and Nutricia for their continued support.

In The Professional Journals

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

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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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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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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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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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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.

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Transform

A Child's Life

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