Friends and family gathered at the Dana Hotel and Spa in downtown Chicago on Saturday evening March 12th. The mood was festive, enhanced by the Roxx Box Band and food provided by Gene Kornota and Tony Klok of the Dana Hotel. Aided by a major donation by Dr. Lisa Ring, we cleared almost $12,000 after expenses. Vitaflo and Cambrooke Foods also sponsored the event.

It was great to see MSUD families old and new along with friends and family who came to support our children. Hannah Dolins (17 classic) and Mackenzie O’Brien (13 classic) helped MC the raffle and silent auction.

Many thanks to Barbara Mudrick (mom of Dylan 3 years old, 2 years post-transplant) and my sister-in-law Karen Dolins (yes, we have the same name) who worked tirelessly to bring in donations and raffle items along with planning the event.

I was thrilled to have successfully bid on a quilt handmade by Wayne Brubacher’s mother for her grandson, Joyce and Wayne’s son Monte. Monte was a MSUD pioneer, the first in the world to be identified with MSUD through a state newborn screening test 12 days after his birth in 1965. Sadly, Monte died at the age of 9 from cerebral edema. Had he lived, he would have been 46 years old on March 12th, the day of our fundraiser. What was learned from his short stay on earth has helped improve the treatment of others with this disorder. Joyce and Wayne donated the quilt in the hope that the money raised will go towards research to help further improve treatment for the many facing the challenges of living with MSUD today.

Putting on the fundraiser was, I can’t lie, a lot of work. The payback, though, was enormous and we got back much more than we put in. We are gratified to know that our work is helping to sponsor research into MSUD. We urge any of you who are considering putting together a fundraiser to take the plunge. You’ll find it gratifying as well, as family and friends come together to help support our cause.

In The Professional Journals

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

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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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Sweet Odyssey

Artur Santos was born on January 18, 2002, the second son of Soraya and Idario Santos. They never imagined how their lives were about change as the second baby arrived.

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My Trip To Israel

I met Avi, Dikla, and Tamar Starr last year at the MSUD Symposium in Raleigh, NC. Tamar, classic MSUD, was 2 ½ at the time, and they invited me to come to Israel and stay with them for a year.

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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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Indigo Charlie Mays - Variant MSUD Age 4

Meet our girl Indigo Charlie Mays. After a smooth pregnancy and delivery, she was born on July 21st, 2013 in Seattle, WA.

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A Child's Life

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