On Sunday, May 3, 2020, I will be running in the Dick’s Sporting Goods 2020 Pittsburgh Marathon in support of the National Organization for Rare Disorders (NORD). I will be running in the Half Marathon and the Marathon relay with a team of family and friends. I started running to stay fit and healthy after having our 2 amazing, beautiful children.
I am honored to participate as a member of the Running for Rare Team, and I thought this would be a great way to raise funds for a special cause. NORD's mission is to help fund research, treatment and hopefully find cures for the many rare disorders and diseases that exist. There are many most of which are obscure and afflict millions of people. NORD's mission is also to support families of those afflicted to simply cope.
I am running for all those who suffer with rare diseases, especially those with Phenylketonuria, or PKU. At 11 days old, I was diagnosed with PKU via the Pennsylvania Newborn Screening Program. PKU is an inborn error of metabolism that results in decreased metabolism of the amino acid phenylalanine due to an enzyme deficiency. Untreated, PKU can lead to intellectual disability, seizures, behavioral problems, and mental disorders.
I am dedicating my marathon runs to my family who has provided the outstanding care and support for me growing up and given me the best possible chance to succeed in everything I do. I am also dedicating this race to the Division of Medical Genetics at the Children’s Hospital of Pittsburgh for the brilliant care and hard work they provide to all patients and families suffering from rare disorders.