Our family is participating once more in the University of Pennsylvania's Million Dollar Bike Ride for rare diseases. We are riding to raise funds for MSUD research so that Hannah and others with this rare, life-threatening disease can have an improved quality of life. The aim of our research efforts is for improved treatments and ultimately a cure.
The current treatment for this disease centers around a metabolic formula. A certain dose must be consumed every day to prevent toxicity from a buildup of the amino acids which cannot be processed in this disease. Inadequate formula results in brain damage and potentially death. You are likely aware of the baby formula shortage caused by the shut down of the Abbott Nutrition plant in Sturgis, Michigan. What you may not know is that this plant makes most of the metabolic formula used by those with MSUD, including Hannah. This is their life support and provides about 85% of Hannah's nutrition every day. We never imagined that a day would come when we weren't able to access this medical food, but here it is. Hannah has not received a shipment in over 3 months. We are OK so far as she had an extra supply, but every day this plant remains closed takes us closer to the time when she will run out. We have been told by Abbott that it will likely be more than 2 months after opening before new formula will be shipped. Alternative therapies will help reduce the reliance on these formulas.


We cannot thank you enough for your support in this effort. It truly does make a difference. Because of the past generosity of our friends and family, we have been able to contribute $400,000 into various research projects that could possibly help Hannah and others living with MSUD in the future. These include projects directed towards understanding the ways in which MSUD affects the brain and gene therapy.
You can contribute in 1 of 2 ways:
1. Directly through UPenn
2. Directly to the MSUD Family Support Group research fund (msud-support.org)