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Jordan, my 23 year old son with MSUD, and I traveled to Houston, Texas again in June for the last phase of the Buphenyl trial  (see last newsletter  Vol 31, Number 1). For two weeks prior to going to Houston, he took the opposite medication (Buphenyl or placebo) of what he took earlier this year. Jordan didn’t think that this drug tasted as bad as the one he took previously and he tolerated it better.

We spent two nights at the research center and again blood and urine tests were done. His intake of formula, food, and snacks was controlled by the staff and was very similar to what he consumed during the first phase.  Jordan was comfortable during his stay and spent time doing his schoolwork, watching TV, and playing games.

If you or your child has been contemplating participating in the study, it is not too late. There is time available this fall or winter. Dr. Lee would like those with Mild or Classic MSUD with a variety of mutations to participate. If you would like to talk to me or Jordan, feel free to email me at This email address is being protected from spambots. You need JavaScript enabled to view it. or call at 740-972-5619. If you would like to talk to Mary Mullins, Dr.Lee’s research nurse, she can be contacted by email at This email address is being protected from spambots. You need JavaScript enabled to view it. or phone at 832-822-4263.

Dr. Lee expects to be in the data collection phase for approximately 2 years.  After that he will analyze his data and share his results.



Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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Transform

A Child's Life

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