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Sheridan, Montana

New Hope for Sheridan Family
by Nancy Banister 
June 5, 2003 issue of The Madisonian

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On April 30, 2003, the FDA approved the use of Enzyme Replacement Therapy (ERT) for victims of a genetic disease called mucopolysaccharidosis (MPS). With her husband, Dan, needing to remain in Montana, Linda Day and her three children, Danette, Scott and Greg visited Washington DC in January to testify before an FDA advisory committee asking them to recommend approval of the biologic drug Aldurazyme. 

Both Scott and Greg have MPS 1-Hurler-Scheie syndrome, a genetic disorder which causes a lack of an enzyme in the body which breaks down sugars, eventually accumulating in the body. Five years ago, Greg's health was plummeting. Frequent hospitalizations and heart surgeries were contributing to his premature death. Then hope came when Greg was accepted into a clinical study started by Dr. Emil Kakkis at UCLA in Los Angeles. Because only one sibling per family would be accepted in this study, Scott chose not to apply. He was afraid his brother might not live long enough for FDA approval for ERT. 

Greg has responded well after five years of treatment. He was able to finish college Summa Cum Laude and live a better life. Unfortunately after five years, the treatment was still unavailable for Scott because the FDA did not approve it. Now Scott's health is deteriorating. When his mother appealed to the FDA committee for approval of ERT, she knew that this was the best and only treatment available. 

Part of Linda's speech to the committee reveals the family's concern for Scott. "It feels like we are walking on eggshells waiting for the 'process' of approval. It is ever closer but still out of reach. Scott's life is completely dependant on you (the FDA committee) and your recommendation. Life and the quality of life are being lost everyday that this treatment is not available." The advisory committee voted unanimously to recommend the FDA approval of ERT.

Dan and Linda are overjoyed that Scott can now start treatments to stop the progress of his disease. He will be receiving treatments from Dr. Ron Loge at Barrett hospital in Dillon. They would like to share their joy with the great community who has supported them for a quarter of a century. They will be having a potluck picnic at their house on Indian Creek Road on June 15 at 4pm. Please bring lawn chairs and come celebrate life with them. 

Copyright Nancy Banister and The Madisonian, reproduced by permission.


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