BENEFITING: National Organization for Rare Disorders, Inc.
EVENT: 2017 Boston Marathon
EVENT DATE: Apr 17, 2017
Hi to all my family and friends!
This year I am running the Boston Marathon to support the National Organization for Rare Disorders (NORD) through the Running for Rare Diseases team. I am super excited and happy to share this incredible opportunity with my rare disease partner, Monica.
Monica has suffered for most of her life with cerebral spinal fluid (CSF) leaks. My hope is that by sharing my Boston Marathon experience with all of you, I can also help spread some awareness of her condition. Monica is a bright and lively young woman with a loving family. Before her condition caused her to leave work, she was enjoying her career in the field of Information Technology. She loves the outdoors, including camping when she can, and keeps an upbeat attitude wherever she goes! Monica has a positive outlook on her life, despite her limitations, and she does everything she can to make each day better than the last. She is heavily involved in promoting awareness of CSF leaks, and is such an amazing inspiration to those around her!
CSF leaks can be spontaneous, or they can be caused by a traumatic injury. The condition is just how it sounds - it is a leak of the cerebral spinal fluid out of the cranial and/or spinal cavity. This can cause a drop in pressure, resulting in extreme headaches and nausea. Many CSF leaks can heal on their own, but when left untreated, they can cause major complications. If they do not heal on their own, tears in the dura must be surgically repaired, and the ongoing symptoms monitored.
Feel free to take a look at the CSF leaks page for more information on this disorder! http://spinalcsfleak.org/
For the tenth 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. For eight consecutive years, 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.