Dear family and friends,
My name is Napoleon C. Venturina, most of you know me as “Nap”. This coming April 15, 2019, I will be running the Boston Marathon as a member of the Running for Rare Diseases Marathon Team in support of the National Organisation of Rare Disorders (NORD).
I started running in 2015 for my health and fitness. As time passed by and after each mile that I have ran, my love for the sport grew even more. Now, as a 61-year old man, I take pride in my accomplishments of successfully running 5 out of the 6 of the world’s Major marathon events, especially in my age. The last one left for me will be the Boston Marathon.
This being the last marathon left prior to my completion of the 6 World majors , I decided to run this special race not just for myself, but also for other people in need. I will dedicate this run for the National Organization for Rare Disorders, Inc., also known as NORD.
NORD is dedicated to supporting individuals and families afflicted by rare diseases and the organizations that serve them through programs of education, advocacy, research, and financial assistance services.NORD has received the top (4-star) rating from Charity navigator, a leading independent evaluator fo charities.
It is a sad fact that the rare diseases have affected the lives of millions of people with about two-thirds of them are children. On average, it takes a patient approximately 5-7 years just to receive an accurate diagnosis where 95% of them will be told that there is no FDA approved treatment or ongoing research to learn more about their disease.
Knowing that the individuals and families helped by NORD often have nowhere else to turn to for assistance is what urged me even more to push through with this marathon and to do so while raising money to support their health.
In lieu of this, I am in need of your help to raise $6,000 to help support NORD’s Undiagnosed Diseases Program. This will help individuals to receive a diagnosis from the National institutes of Health (NHI). Donations in support of this campaign will be tax-deductible to the extent permitted by law. Your support will be of utmost help for them.