• "The speakers were great, so much information and insight. I really loved Dr. Morton's talks. He gives all of us great hope."
  • My first meeting with Dr. Morton was very satisfying. I like the way he explained the information. I have learned in two days more than I have known in 25 years. I have so much to learn, it is like I need to start at point one because things have changed so much with the new technology and new understanding. Every family that has a PKU or MSUD child should attend one of these Symposiums. They are very educational and you get to meet a lot of wonderful people."
  • "Things I learned: (1) Leucine levels going from 48 to 5 mg/dl in 36 hours - that is advanced management of MSUD! (2) I should be using the tyrosine the doctor gave me for my children with MSUD that is sitting in my cupboard! (3) Valine deficiency makes children (and rats) irritable. (4) Most of the cortex formation of the brain takes place before 1 yr. of age and this depends on correct nutrition to the brain."
  • I really enjoyed Dr. Morton's discussions. He is able to bring the complexity of MSUD down almost to my level. I liked the update about newborn screening, Sandy's discussion, Neo Gen, the attorney and Harvey Levy. I also liked talking with all the families. I would like to get more information about Neo Gen. I think I am going to start giving out information about how to get this testing done to people I know who are pregnant. - Denise Pinsky
  • The last conference I was at was four years ago. It's wonderful to see how nicely these young men and women and children have developed. - An Aunt
  • I learned two new things: Being constipated and spending too much time in the Jacuzzi can potentially elevate leucine levels! - Sandy
  • As I sit here looking over our group, I have to think, MSUD is definitely not a respecter of persons - it can be anyone or anywhere in the world. It unites us and we feel for each other and understand each other. We can also be thankful for all those older ones that "paved the road" for these younger ones. But their brain damage will not disappear; it will be with them the rest of their lives. Much is being learned and that is why we have these Symposiums. It is helpful to us just to see all the families together and to hear each speaker. - Edna Newswanger
  • Because I have an older child, I didn't have much interest in newborn screening, but after listening to the speakers on this subject, I have gotten more interested. I would even like to help with newborn screening on a volunteer basis. Also I got a lot out of the short but informative speech about the Scott C. Foster Metabolic Research Fund. I enjoyed and found very informative the breakout for the preteen/teen/ parent group. The "Gene Repair Therapy" talk by Dr. Morton was very good. - Renee Eck


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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