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First row: (from left to right) 2 of
Dr. Hutson's staff, Mary Kathryn,
Joyce, Shayla, Jordan and Dave.
Second Row: (from left to right)
1 of her staff, Ivan, Dr. Hutson,
anotherstaff member, Wayne
and Sandy.
 
Several MSUD board members traveled to Winston-Salem, NC in March 2007 to meet with Dr. Susan Hutson and her staff. The purpose of our visit was to learn more about her MSUD research. Those present were Wayne, Joyce, and Shayla (MSUD) Brubacher from IN, Ivan and Mary Kathryn Martin from PA, and Dave, Sandy, and Jordan (MSUD) Bulcher from Ohio.

We met Sunday afternoon March 25th at a local hotel. From there we went to Dr. Hutson’s home for a social evening complete with spaghetti dinner, regular and low protein. We enjoyed getting to know Dr. Hutson and appreciated her hospitality.

The following morning, Monday March 26th, we met Dr. Hutson at Wake Forest University. Dr. Hutson and her staff presented their plans for developing MSUD mouse models. (See Dr. Hutson’s article in this newsletter for details) Our visit concluded with a question and answer session. Dr. Hutson and her staff were eager to learn more about daily life with MSUD. Shayla Brubacher and Jordan Bulcher MSUD Board Members Visit Dr. Susan Hutson answered questions such as, what can you eat?, does your formula taste good?, and what do you feel like when your leucine is elevated?. The professionals seemed genuinely interested in understanding life with MSUD.

We want to thank Dr. Hutson and her staff for sharing their research plan with us. We are excited that several teams of researchers in the US are interested in developing better treatment options for MSUD and feel confident that breakthroughs are on the horizon.

Thus far, $28,884 has been donated to Dr.Hutson’s research from those interested in MSUD research. A special thanks to Dean and Amy Jones, MSUD parents from Ohio, who donated $4,800 through fundraisers. A remaining balance of $6,116 exists to complete our commitment to Dr. Hutson. If you would like to make a tax deductible donation, please send check by December 2007 to:

Dave Bulcher, MSUD Treasurer, 9517 Big Bear Avenue, Powell, Ohio 43065

Make check out to: MSUD Family Support Group
(write Dr. Hutson’s research in the memo area)

As always, thanks for your support,
Sandy Bulcher, Director MSUD Family Support Group

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

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As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

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MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

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The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

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I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

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Transform

A Child's Life

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