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If you still have questions about MSUD after reviewing the information on this website, contact the appropriate person on this page.


Resource Persons

   

Medical Advisors

   

Nutritional Advisors

For organizational information, printed material or addition to our mailing list:

Sandy Bulcher, President
Powell, Ohio
740-972-5619
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For donations:

Dave Bulcher, Treasurer
9517 Big Bear Ave
Powell, OH 43065
740-972-5618
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For legislative & educational issues:

Marcia Hubbard
Corresponding Secretary
Cedar Hill, Missouri
314-277-8168

Advocacy:

Jordann Coleman
Advocacy Chair
Concord, CA
925-349-4601
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For inquiries in Spanish:

Adriana Carbajel (MSUD parent)
This email address is being protected from spambots. You need JavaScript enabled to view it.
480-278-4713

Vanessa Funes (MSUD adult)
This email address is being protected from spambots. You need JavaScript enabled to view it.
508-654-2644

Please join the Spanish speaking MSUD Family Support Group by emailing the eGroup at This email address is being protected from spambots. You need JavaScript enabled to view it.

For newsletter submissions:

Karen Dolins, EdD, RD
Newsletter Editor
Scarsdale, New York
914-723-5458
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Holmes Morton, M.D.
Founding Pediatrician
Central Pennsylvania Clinic, A Medical Home for Special Children & Adults
PO Box 5806
4527 East Main Street
Suite E
Belleville, PA 17004

Melissa Wasserstein, MD
Chief, Division of Pediatric Genetic Medicine
Children’s Hospital at Montefiore
Associate Professor Albert Einstein College of Medicine
Bronx, NY
718-741-2318

Harvey L. Levy, MD
Senior Physician in Medicine and Genetics
Division of Genetics and Genomics
Boston Children's Hospital
Professor of Pediatrics
Harvard Medical School
One Autumn Street, Rm 526.1
Boston, MA 02115
617-355-6346
Fax: 617-730-4856
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Can Ficicioglu, M.D., Ph.D.
Associate Professor of Pediatrics
Perelman School of Medicine at the University of Pennsylvania
The Children’s Hospital of Philadelphia
Division of Human Genetics/Metabolism
Director, Newborn Screening Program
Director, Lysosomal Storage Disorders Program
3501 Civic Center Blvd #9054
Philadelphia, PA 19104
215- 590-3376
Fax: 215-590-4297

Jessica Scott Schwoerer, M.D.
Assistant Professor Dept of Pediatrics, Division of Genetics and Metabolism
University of Wisconsin Hospital and Clinics/ Waisman Center
1500 Highland Ave Rm 341
Madison, WI 53705-2280
Office (608) 263-5497

Rani Singh, Ph.D., R.D.
Emory University
Div. of Medical Genetics
2040 Ridgewood Dr.
Atlanta, GA 30322
404-778-8519
Fax: 404-778-8562

Sandy vanCalcar, PhD, RD
Child Development & Rehabilitation Center
Oregon Health and Science University
3181 SW Sam Jackson Rd
Portland, OR 97239
503-494-5500
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MSUD Family Support Group Board


President:
Sandy Bulcher, OH

Vice President:
Ed Fischler, FL

Treasurer:
Dave Bulcher, OH

Secretary:
Karen R. Dolins, NY

Other board members:
Ivan Martin, OH
Herb Foster, MA

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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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.

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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.

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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.

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Emory Metabolic Camp 2018 Announcement

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

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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.

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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

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

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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.

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of MSUD adults and children

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