My husband, Dave, and I decided to take a vacation to Costa Rica. Like Wayne and Joyce Brubacher, we like to meet MSUD families from other states or countries when we travel.  I was aware that the Abarca Mora family lived in San Jose, Costa Rica and contacted them about getting together during our trip. We had some difficulty communicating due to a language barrier, but with the help of a Spanish speaking friend we were eventually able to arrange a time and place to meet.

On the evening of our first day in San Jose, Randall Abarca Mora, his wife Johanna, and their 6 year old MSUD daughter Stacy, met us at our hotel. Dave and I were very excited to meet and spend time with them.  Randall’s friend was present to assist with translation. We spent most of our time talking about our children and their lives with MSUD. Randal and Johanna shared their struggles in obtaining medical formula and low protein food for Stacy.  They are considering forming a Costa Rican MSUD support group. Hopefully, as a group they will have more influence and be able to make changes that improve the lives of the MSUD children and adults in Costa Rica.

We have always found it very rewarding to meet new MSUD families when we travel. If your travel plans allow it, we would encourage you to consider it as well.

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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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From The Chairman’s Desk

On July the 21st the MSUD Board of Directors traveled to Bethesda, Maryland for our annual Board meeting. We stayed at the Hyatt Regency in Bethesda.

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Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy and fundraising efforts.

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In The Professional Journals

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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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