I had requests to write about what is involved in hosting a Symposium. I had mixed feelings about how to write the article. I didn't want the article to sound so overwhelming that no one ever volunteers again, but I did want to be honest and convey that it involves A LOT OF WORK - too many details to list completely.

Even though I never hosted a Symposium before, I was smart enough, though, to utilize valuable resources (Susan Witter, MSW, host of the '94 Symposium and Wayne and Joyce Brubacher). My husband Dave and I volunteered in June '94 at the Missouri Symposium. In August of '94 I called many area hotels and requested information packets. I narrowed the list of possible hotel sites using several criteria - location, size and number of meeting rooms, reasonable and adequate accommodations, etc.

In September, '94 I visited several hotels that met the criteria and finally decided on the Comfort Inn. After confirming Dr. Allen's schedule, I selected a date for the Symposium. January of '95 was the start of fund raising. I had never done any fund raising, so I first read several books from the library. I developed a fund raising packet with sample letters, receipt forms, and thank-you's and sent them to my fund raising assistants, Renee Eck and Sandy Kiel. From January to December '95, I sent out nearly 200 letters to formula companies, low protein food companies, local businesses, organizations, physicians, family, friends, and neighbors.

Renee and Sandy also sent out many letters requesting financial assistance. By December of '95, we had raised $13,000. Incidentally, several large organizations decided not to fund the Symposium, because their money "wouldn't benefit enough people." I also applied for a substantial grant from a local organization, which proved unsuccessful.

With most of the fund raising finished, my next hurdle was to finalize the topics and speakers. I reviewed many old Newsletters and published articles to decide upon meaningful topics and knowledgeable speakers. I also spent many hours on the phone getting referrals for local speakers.

The next few months were spent working on details, i.e. children's entertainment, child care providers, and mailings to the speakers and families. April '96 was a busy month as the Symposium was only 2 months away. More specifics about the Symposium were sent to families and speakers.

May and June proved to be the most hectic months of all, as there was many specifics, i.e. child care coverage, volunteers to make low protein snacks, accommodating needs of speakers, just to name a few. It was challenging to keep abreast of the ever-changing list of families and professionals attending. And finally, the day before the Symposium, I provided the hotel manager with numbers for meals and conference room seating. The evening before the Symposium we hosted Rosemary and Samantha Whitney (Australia) and Loreto Ilabaca (Chile) at our home. We really enjoyed this special time.

In spite of the large amount of work involved in hosting a Symposium, the experience was very rewarding personally. I learned a great deal and, hopefully, have grown through the experience. I'd be negligent if I didn't mention how helpful Joyce Brubacher was. I called her many, many times for ideas and suggestions. My husband Dave's organizational skills and knowledge of computer software were very helpful, also. And finally, a special thanks to our sons, Tyler and Jordan, for their patience during my many phone conversations.


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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