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Group photo

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A "round table" discussion by parents left to right: Karen Sullivan, Renee Eck, Irv & Adrienne Geffen, Robin Stone and Arminia Libunao.

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MSUD friends: Zachary
Pinskey, Anna Ruter and
Karabeth Newswanger

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Flew as strangers on same plane,
now Phoebe Saunders and daughter
Jennifer (MSUD) meet Tony and Lisa
Kohl on common ground.



Zachary Pinskey picks a name as his mother, Denise, holds the box. His sister waits to deliver door prize after Sandy Bulcher announces the name.

Symposium 2002 in Ann Arbor, Michigan was a huge success. Three hundred and twenty-two people attended from 26 states and seven countries: U.S.A., Canada, England, Brazil, Lebanon, New Zealand, and Iran. There were 86 families represented, including 22 persons with MSUD over 18 years old. Sixty-one of the 78 attending children and adults with MSUD posed for this photograph. It took a major effort to get this many people into one photograph, and it took Lance Ruter on the microphone to keep everyone focused on the task. It also took a major effort and focusing on the task for the Bulchers and the Michigan families, with the support of the University of Michigan Pediatric Neurology Service, to implement this great Symposium. The feedback from questionnaires and comments that were made, expressed great appreciation for this Symposium. Mona Estrada, who came with several Spanish speaking families from California to serve as an interpreter, wrote: "I have learned more about MSUD in two days than in all my 28 years in Special Education. I am amazed at the support and strength you give your parents. There was a bond and sense of belonging. The parents I brought came away with a sense of belonging. It was worth the trip just to hear one of my parents say, 'I thought I was so alone, now I see I'm just one of many.'"

Here is a sampling of the many compliments written at the end of the Symposium:

Dietitian - "You had an exceptional program."

Mother - "Loved very minute! Also loved seeing my daughter make new friends."

Parent of teen - "Great breakout sessions! Sharing time with families is always enjoyable and valuable, a great learning experience. The teens had a fabulous time together. Food and facility were also super."

Parent of young child - "It was very helpful to know that all the other parents with the same age babies are experiencing the same issues and problems that we are with our son, for example, not tolerating the heat and knowing the tricks of the trade to get them to take all their formula!"

Grandparent - "Enjoyed meeting families and sharing experiences with other grandparents. Speakers were good..."

Adult with MSUD- "I have learnt that my own country (New Zealand) has a lot to learn in regard to the treatment of MSUD. I also have a better understanding of my anxiety problem, which I had previously not connected to MSUD. I have also learnt that MSUD of intermittent nature is far easier to manage in comparison to the classic form. From the Breakout Sessions it has been interesting to learn that most of us have similar experiences with the way our bodies behave, for example, our mood swings, our tendency to scramble messages and our forgetfulness."

All the speakers were complimented for being interesting and informative. The "Treatment Update" given by Dr. Kevin Strauss from the Clinic For Special Children in Strasburg, Pennsylvania, was especially appreciated "Dr. Strauss did a good job presenting his information at our level." "The grave danger of cerebral edema was vividly and excellently reviewed for me."

The teens and young adults with MSUD had four interesting workshops. The first day there was a medical workshop with Dr. Kevin Strauss and a "Growing Up With a Metabolic Disorder" workshop with Sarah Foster (adult with PKU). On the second day they met with Laura Kuehnert-Gaines (a child and family therapist) for a self-esteem workshop and the young women met with Sandy van Calcar (nutritionist) for a maternal MSUD workshop. There were two workshops for siblings, one for the 6 to 11 year olds and one for the teens and older siblings. This provided a time of sharing and support for these groups who may have seldom or never had this opportunity.

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Children sing a song for the audience at the end.

The atmosphere of the Symposium and the large volume of information is impossible to share in the Newsletter. You need to attend the Symposiums in order to ask questions, talk to the professionals, absorb the information and feel the warmth and companionship of those who understand. We anticipate another wonderful, refreshing Symposium in the sunny south in 2004. Plan to join us.

Update: Jaime Hamilton from Wisconsin, who has MSUD, and her nutritionist, Sandy van Calcar, spoke at the Symposium about Jaime's first pregnancy, the birth of her first child, Hailey May, and the progress of her second pregnancy. On December 2, 2002, Jaime gave birth to a second daughter, Kaitlyn Christine. Her first pregnancy was complicated by an undiagnosed thyroid problem, which was closely monitored during her second pregnancy. Jaime and both daughters are doing just fine. We congratulate Jaime and her husband, Brian, and the Biochemical Genetics Clinic at the University of Wisconsin for monitoring Jaime and the pregnancy of two other women with MSUD. These three mothers each had two children, none with MSUD.

- The Editor

CHANGE THE LIVES OF MSUD ADULTS AND CHILDREN

The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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