Recently my family was greatly impacted by a rare disease. My sister Jennifer Santos suffered from a rare auto immune disease called CIDP. We went from riding roller coasters with our families two years ago to watching her life get cut short at the age of 44. It was an eye-opening experience to say the least. I always figured that it is 2018 and that all things can be controlled or fix. However, when it comes to the worlds most complicated machine that simply isn't the case. I have signed up to join Running for Rare to help raise awareness and funds for those who do have rare diseases. It took until the bitter end for my sister to be diagnosed so hopefully as a community we can help people find a diagnosis quicker without having a severe financial burden. I would also like to see more research happen for these rare diseases in hopes the number can be reduced.
Jennifer was a mother, a daughter and of course a sister who was an Air Force veteran that will be greatly missed. She was always looking out for others and always put family first no matter the situation.
We both grew up in New England and even to the point where we watched and cheered our father on for the 99th and 100th running’s of the Boston marathon. This combined with her tragic and sudden loss are why I have chosen to join the effort and run the Boston Marathon in her honor.
National Organization for Rare Disorders, Inc. wrote: For the 12th 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 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.