On July the 21st the MSUD Board of Directors traveled to Bethesda, Maryland for our annual Board meeting. We stayed at the Hyatt Regency in Bethesda. The location and hotel was selected for two reasons: We would be meeting with a scientist from the National Institute of Health (NIH) and we wanted to check out the hotel as a possible future Symposium site.

On Friday afternoon we met with Tom Eggerman, MD PhD, Program Director of the Division of Diabetes, Endocrine, and Metabolic Disease at the NIH. Our goal was to be better informed about the workings of the NIH and the way in which they secure funding for research. He advised us that the best way to get financial support is through Congress. As an example he noted that funding for Type 1 diabetes research is mandated by Congress. He recommended that we take this approach, either by contacting our own congressperson or those who serve on a specific committee. With a mandate to fund research related to MSUD, the NIH could then put out a request for proposals (RFP). He noted during our meeting that for the first time the FDA has approved gene therapy for leukemia. He noted that there is currently no research specific to MSUD in their rare disease portfolio. We were pleased and felt our time with him was well spent.

After our meeting with Dr. Eggerman we convened for our board meeting, which we continued the next day. Our first order of business was the election of officers. The following officers were elected:

  • President: Ivan Martin
  • Vice President: Sandy Bulcher
  • Treasurer: Dave Bulcher
  • Secretary: Karen Dolins

The remainder of the meeting focused primarily on two areas: finalizing a business plan and developing a patient registry.

A clearly conceived business plan is essential to moving our organization forward. Our business plan identifies 4 broad goals:

  1. To connect with families and professionals
  2. To promote research
  3. To engage in advocacy
  4. To develop a fundraising plan which will allow us to achieve our goals

  5. Development of a patient registry is an important step in promoting research for MSUD. The board decided to partner with Emory University and their NBS Connect which has developed a registry. Sandy Bulcher and Karen Dolins will be meeting with Dr. Rani Singh who spearheads this effort at Emory to finalize the details. Please see the article on page 16 which further describes the Registry.

    Thank you for your continued support and don’t forget to mark your calendars for the next Symposium in Pittsburg, Pa. on June 28th thru the 30th 2018. I hope to see you there!

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.

Read More

NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

Read More

Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

Read More

Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

Read More

Emory Metabolic Camp 2018 Announcement

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

Read More

From The Chairman’s Desk

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.

Read More

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.

Read More

The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

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

Read More

19th Biennial MSUD Symposium

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.

Read More

Change the lives

of MSUD adults and children

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates