<div>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.  
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<div>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.  
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<div>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.
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Dawn Merola

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HUNTSMAN DEANNA

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amanda pannenbacker

Jones Shannon

Anthony Racanelli

Mike Onufrey

Caitlin Cahalan

Mandy Ferro

26.2 for PKU

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