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Sandy was too modest to pass on all the comments of praise she and Dave received. We have heard many. Anyone involved in putting on a meeting like this knows the huge amount of time, effort, and the mental and emotional challenge involved. Wayne and I extend our admiration and deepest thanks to Dave and Sandy for an excellent job and attitude. Following are some of the comments we heard or received in letters.

Comments from Jeannie Gauvin: This is the first time my teenage sons, Allen and Jason, and my husband attended the Symposium with me. We all agree it was the best vacation we ever had. The boys say they had an awesome time, liked the food and pool, and made friends with many of the other kids and adults. Allen loved helping sing with the group at the end, and Jason regrets not helping. It was great sharing this time with my family and being part of the larger MSUD family. There was a peculiar bond of understanding in the emotional highs and lows as we shared our common blessings and burdens. We all felt cared for, and cared about, accepted and loved! Mr. & Mrs. Bulcher did a marvelous job organizing this Symposium and especially addressing the issues with the older kids. We don't want to miss another Symposium if possible.

Parent of a Teenager: The long weekend charged our emotions, challenged our minds and certainly inspired us to move forward on some important issues and future planning. When I look at our grown up youngsters each doing their own special thing and reflect on years gone by, I simply start to cry - the mixed emotions of pride and sadness are just too much. They are truly "beautiful children." I think Sandy and Dave did a remarkable job in putting together such an impressive meeting for us and a great program for the kids. They were efficient, warm and caring. I do hope others appreciate their efforts and hard work as much as we did.

Unsigned: I think this was the best MSUD Symposium we had - such a large group. Was very interesting meeting these older MSUD people, to hear of their experiences. Also enjoyed meeting the people from Chile and Australia and to realize how fortunate we are for the treatment we have. These MSUD children taking part means so much; also hearing parents tell their experience means so much.

Mabel Burkholder: Definitely write up about Symposium in Newsletter - especially for the people who could not come. I really appreciated it when I was home with a sick child. I feel so good about the whole thing - meeting and talking with parents and getting new ideas from doctors. Thank you.

Other comments: "We came home with a new commitment and purpose." "The second day was so worthwhile. I really enjoyed Phyllis Acosta, the Sibling Issues, and the parent talks. Most of the speeches were so positive." "I was really touched by Herb Foster's sharing about his son's death."

Renee Eck helped enthusiastically with fund raising and with other responsibilities at the Symposium. Below she shares some thoughts on the conference.

I really like the booklet we all received in our folders that Dr. Allen had made up about everything on MSUD. I took it with me to the hospital on our next visit and it helped some of the other doctors that were helping with my child. I suggest taking it with you on hospital stays to help others who do not understand what all the problems are with the disease. And also if you have to go to a different hospital or see a different doctor. It was a real help to us.

I really enjoyed Dean Danner who talked on genetics. He was very open and very funny at times. Even though everything he talked about was not always easy to follow or understand. I think I got a lot out of what he was talking about. I THINK?

Even though I knew a little about the skit, "The Things People Say", I thought it was really good and should be printed in the Newsletter. The actors, Kathy Bachmann, and Dave and Sandy Bulcher couldn't have done a better job. They were GREAT!

Others speakers I really enjoyed were: Vicki Delaski on Sibling Issues, Emilio Amigo on Self Esteem, and the parent speakers, Loreto Ilabaca from Chile and Rosemary Whitney from Australian and her daughter Samantha.

After hearing the three international speakers, I don't think you could help but think about how much harder it is for them where they live. We do have an easier time with this than they do. I will think about them a lot, and I hope they keep in touch with the group. I'm sure that many of our thoughts are with them.

Cathy Codner sent me a letter soon after the Symposium which included the following comments. Her daughter, Lauren is 10.

The biggest effect the conference had on our family was on Lauren . . . and for that I will be forever grateful. For her, having MSUD and being different was always a negative feeling and her self-esteem always had a large chip in it. When we left the conference, we had a long talk. I'll summarize her thoughts in this way:

  1. She enjoyed the conference.
  2. She was a bit scared by what she saw and the effects that MSUD has on many of the children.
  3. From that Lauren realized that her diet is extremely important, and she needs to pay more attention to it.
  4. She became aware for the first time, by observing others, how behavior can change when someone's blood levels fluctuate. She could never understand before how I could tell that she needed to get something to drink, or she needed to rest, or whatever I observe. As the conference went on, and she observed others, things seemed to make sense to her.
  5. Most importantly, Lauren felt for the first time that having MSUD made her special - and that being special is a good thing, not bad.

Lauren's attitude had become so much more positive. I can't tell anyone how important the conference was for us! Never having attended before I will not miss another one.

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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