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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, Vice President
Powell, Ohio
740-972-5619
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For donations:

Dave Bulcher, Treasurer
Powell, Ohio
740-972-5618
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For legislative & educational issues:

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

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

Vanessa Funes (MSUD adult)
This email address is being protected from spambots. You need JavaScript enabled to view it.
508-596-0672

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

Susan C. Winter
, MD
Dir., Med. Genetics/Metabolism
Valley Children's Hospital
9300 Valley Children's Place
Madera, CA 93638
559-353-6400
Fax: 559-353-7213
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Neil R. M. Buist
, MD
Professor Emeritus
Pediatrics and Medical Genetics
Oregon Health & Science University
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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
Ivan Martin, PA

Vice President
Sandy Bulcher, OH

Treasurer
Dave Bulcher, OH

Secretary
Karen R. Dolins, NY
Ed Fischler, VA
Jennifer Saunders, AZ
Herb Foster, MA

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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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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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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Metformin As A Possible Therapeutic Agent In The Treatment Of MSUD

The MSUD Family Support Group has provided funds to Buck Institute for its preliminary studies investigating metformin

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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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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.

Read More

Transform

A Child's Life

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