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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.

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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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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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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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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Advocacy

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

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Transform

A Child's Life

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