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This issue of the newsletter follows up on our last issue with a continued look at ongoing research into treatment for MSUD. In addition to a summary of recent studies, Sandy Bulcher tell about her son Jordan’s experience as a subject in Dr.Lee’s buphenyl study.

Those of you who attended our last symposium heard Dr. Gerald Downes describe his work with MSUD zebrafish. My daughter Hannah I visited his lab, where we saw firsthand what zebrafish look like, and how zebrafish embryos can be used to help identify drugs which might improve treatment.

We thank Sharlene Balinsky for sharing her experiences when she was diagnosed with an ovarian cyst with us, and Shohreh Heydarian Bonyadi for sharing her son Hootan’s story and their family’s experience with MSUD in Iran.

I ask you to think about the many wars in which you can help your MSUD community.
  • Rare Disease Day id on February 28. Visit rarediseas.org or contact This email address is being protected from spambots. You need JavaScript enabled to view it. to find out how you can help advocate so MSUD and other rare diseases are not forgotten.
  • Volunteer for the newsletter. Glenda Groff is retiring from her post as Diet Wise editor, and a replacement is needed.
  • Raise funds to help support important research.
Send us your personal stories.

I hope to hear from you! Warmly, Karen Dolins.



In The Professional Journals

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

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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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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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MSUD Advocacy Update

Healthcare and issues facing the rare disease community have been at the forefront of national conversations over the past 6 months.

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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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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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Transform

A Child's Life

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