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.


In the 2016 survey of the membership of the MSUD Family Support Group, research for improved treatments and potential cure was rated “most important” by 90% of the responding members.

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20th Annual White Horse Beach Charity Golf Tournament

On July 29, 2017 Charlie O’Rouke and his committee held the 20th Annual White Horse Beach Charity Golf Tournament.

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Galen Carrington Classic MSUD age 27

Galen Carrington is a 27 year old Indiana resident who has classic MSUD. He underwent liver transplantation 5 years ago at Children’s Hospital

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As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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Cambrooke Foods Hosts Local Event

Cambrooke has been doing cooking demonstrations, social meet ups and educational events for patients, their families and the clinician’s that support them for many years.

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Adjusting Protein In An Adult With MSUD

A little over a year ago, in January, Jeff was just not himself. He had limited energy, was not eating well, and often appeared slightly agitated.

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A Child's Life

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