This is a report on the MSUD formula crisis in Costa Rica which began in June, 2009. We were told there would be no more of the Mead Johnson BCAD formula until September. Some children with MSUD were running out of formula and the families shared the little they had left. Each can provided one more week of hope and well-being.

Because my foster son Dwight had died, I had extra formula on hand. [See the article “Our Visit With MSUD Families in Central America” by Joyce Brubacher in the Fall 2009 issue.] Following the doctor’s advice, I calculated the amount of formula I needed until the crisis was over for my foster daughter Karla who also has MSUD. I was able to provide 21 cans of the BCAD to share with other families. This was only a drop in the bucket in comparison to what was needed. During this time, there was only one child hospitalized. This was partly due to reflux, although he was also without MSUD formula.

I told Joyce Brubacher about our formula shortage. She put me in contact with Rick Finkel from Applied Nutrition to see if he would donate some Complex Essential formula. He shipped 32 cans free of charge with the shipping paid. The formula came in my name, and by a miracle from God, I was able to get it out of customs in one day. I was grateful for the help of the sympathetic officials who worked in the various offices, otherwise we would not have been able to get it out of customs for 30 days. At the end of that weary day, with the help of others, I delivered 16 of the cans to Dr. Saborío, our doctor at the clinic in San Jose. The other 16 cans we divided between the families most in need, giving 2 cans for each child with MSUD.

We parents are very grateful to Rick and Applied Nutrition for this lifesaving gift. The children really liked this formula. About 2 weeks later, we once again had formula available, MSUD Maxamaid from Nutricia. Finally, in February of this year, we were able to get BCAD again. Hopefully, the ones responsible for keeping formula in stock will plan ahead in the future because the crisis caused untold anguish and distress for the parents as all of you can imagine!

NBS-MSUD Connect: Advancing MSUD Research And More


Rare disease registries have received attention in recent years because of the many ways in which they can benefit the rare disease community.

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

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Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

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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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In The Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

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MSUD Advocacy Update

Healthcare and issues facing the rare disease community have been at the forefront of national conversations over the past 6 months.

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A Child's Life

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