MSUD Symposiums - Held Every Two Years

The MSUD Symposiums provide an opportunity for health care professionals to share information on the latest developments in treatments, research, and other health care issues with families and adults with MSUD. All attendees have structured and informal times to share, seek support, learn from each other, and gather information on new low protein products.

Watch for details on Symposium 2008. Read about past Symposiums here.

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Benefit Auction For The Clinic For Special Children

The Clinic for Special Children (CSC) is a non-profit diagnostic and primary pediatric medical service for children with inherited metabolic disorders. It is located near Strasburg, Lancaster County, Pennsylvania. CSC serves the area Mennonite families who have a high incidence of MSUD as well as other families with MSUD and other genetic diseases. It provides diagnostic, genetic and metabolic laboratory testing, comprehensive medical care, and support services for the families. It is also involved in clinical research to improve treatment for these children. Families and professionals from 27 states and 14 other countries have sought information and help from CSC.

The Clinic is funded through a combination of fees for services, proceeds from benefit auctions and private contributions. Funds received from the auctions help the Clinic provide services at a reduced rate to the families who have no medical insurance. Funds are needed for important research to develop better diagnostic and treatment methods. This information is shared with other physicians and parents through papers, letters, and lectures which benefits all families with children with MSUD.

Two smaller auctions are held in other areas: Morris Cove in Blair County in western PA and in Shippensburg, PA . For more information, call the Clinic for Special Children: 717-687-9407. Check their web site at: www.clinicforspecialchildren.org/Fundraising.html.

The benefit auction at the Leola Produce Auction facility, Leola, Pennsylvania is held each year on the 3rd Sat. in September. This auction begins at 8:30 in the morning with several auctions rings going all day long. Over 75 beautiful, homemade, donated quilts are sold each year along with furniture, elaborate play houses and sheds, Amish items, crafts and thousands of other items. Food booths sell thousands of meals of barbequed pork, soft pretzels and donuts made on the spot, subs, pizzas, and many other foods and home-baked items. Two smaller auctions are held in other areas: Morris Cove in Blair County in western PA and in Shippensburg, PA . For more information, call the Clinic for Special Children: 717-687-9407. Check their web site at: www.clinicforspecialchildren.org/Fundraising.html.

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Emory University's Metabolic Camp for Girls with MSUD,
PKU and Other Metabolic Disorders

The metabolic camp for girls ages 12 and older is held for 5 days every year in a fraternity house on the Emory University campus. It provides a supportive camp environment for girls with these metabolic diseases to live and learn together. It teaches proper nutrition, cooking skills, self-management skills and much more. All counselors are registered dietitians. For more information and a registration form, click here.

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Resource Materials

• MSUD Brochures


• Copies of Maple Syrup Urine Disease: An Overview


• Back issues of the MSUD Newsletter


• Glossary of Terms pertaining to Maple Syrup Urine Disease


• Conversion Chart showing comparison of µmol/l and mg/dl units of measure


• Equivalency Lists for BCAA-Restricted Diets, a food list with leucine, protein and calorie values


• MSUD Dietary Resources List, a list of companies who are sources for low protein products and medical foods for MSUD diets. Click here to view list


• MSUD Teacher's Guide
  The Arizona Department of health Services has a "Teacher's Guide to MSUD" available for $2.50 each. This new guide booklet is ideal to give to the teachers of children with MSUD. Make checks payable to the Arizona Department of Health Services. Send a note requesting the booklet to:

  Arizona Department of Health Services
  Nutrition & Chronic Disease Prevention Services
  Attn: Lee Renda
  150 North 18th Ave., #310
  Phoenix, AZ 85007-3228

State Funding For Foods And Formula

Many states provide some type of funding for the medical foods (formulas) for PKU. These programs vary considerably. Some are funded by the state and others mandate insurance coverage. Some programs include MSUD and other metabolic diseases, others only PKU.  Low protein foods are covered in some programs  Several stares have limitations as to the amount of funding per year and/or age limits.  Check with your clinic about your state’s program and funding.

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