26.2 for PKU

I am running on behalf of my nephew, Theodore (#LowPheoTheo) who was diagnosed with Phenylketonuria (PKU). When Theo was born, our whole world was spun around. His diagnosis at only 3 days old, was so heartbreaking and confusing. Nothing like this has happened to anyone we know! My sister and brother had to learn as they went to adjust and keep Theo's diet under control so he didn't experience the negative consequences of PKU. Of course, he has good and bad days, but these three are rockstars! Although Theo will have to overcome obstacles for his entire life, it is so assuring to know there is a huge team of Rare Heroes on his side! Organizations like NORD bring light to the negatives that are associated with having a Rare Disorder. NORD has helped my sister, brother and Theo throughout this entire process to assist in giving Theo the best care and diet he can have.

For the 13th consecutive year, patients and advocates will run as members of the Running for Rare Diseases Marathon Team in support of the National Organization for Rare Disorders (NORD). NORD is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them through programs of education, advocacy, research and financial assistance services. Rare diseases impact the lives of 25-30 million Americans – two-thirds of whom are children. On average, it can take a patient 5-7 years to receive an accurate diagnosis, at which time 95% will be told there is no FDA approved treatment or ongoing research to learn more about their disease. The funds raised from the Running for Rare Diseases Team will support NORD’s Undiagnosed Diseases Program; helping individuals to receive a diagnosis from the National Institutes of Health (NIH). Donations in support of this campaign will be tax-deductible to the extent permitted by law. NORD has received the top (4-Star) rating from Charity Navigator, a leading independent evaluator of charities. The individuals and families helped by NORD often have nowhere else to turn for assistance. Your support of this campaign is very important to them.

More information about National Organization for Rare Disorders Inc: NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.