If you haven't already - please meet Riley - or "Roo" as we sometimes call her (see picture). Riley is my 7 year old daughter, and 2 years ago Riley was diagnosed with Neurofibromatosis, type 1 (NF1) - a genetic syndrome associated with the chronic growth of tumors on nerves throughout the body, bony abnormalities, and learning disabilities, that affects 1 in 3000 people (see www.nfincne.org for more information on NF).
The news of Riley's diagnosis was of course heartbreaking for my husband and me. How could anything be wrong with this energetic, outgoing, beautiful little girl? Nevertheless, with genetic testing, x-rays, a head-face-neck-spine MRI, and numerous appointments with 8 different specialists at Children’s Hospital in Boston, Massachusetts, Riley's situation would continue to unfold, and we found out that Riley has two non-resectable tumors (plexiform neurofibromas) that are tracking along cranial nerves. What we don’t know, however, and what is most concerning for my husband and me, are the HUGE numbers of remaining 'unknowns', such as: Are Riley’s tumors still growing, and how many more tumors will Riley get as she gets older? How will Riley’s situation affect her academically, physically, and socially? Finally, what options will we have over the years to minimize the problems associated with Riley’s syndrome? The latter question is where you can help me the most.
For the second year, I have committed myself to train and ride "Coast to the Cure", a 100-mile bike ride so that I can spread awareness about NF, while also raising funds that will help support NF research, families and children. There is still so much to know, so much to understand, and so much to learn about NF and its many related diseases, and I know both as a mother to a daughter with NF1, as well as a physician (surgical pathologist) who works daily in the field of cancer and translational oncology research, what kind of affect financial support can have on numerous levels.
So, I am asking you to donate to my "Coast to the Cure" ride. Please help NF, Inc Northeast and the researchers address the issues that can help my daughter and so many others who are affected by this devastating disease live a better, healthier, and more normal life. Please, think about our Riley. She, like all children with or without NF, deserves the best out of her life, and your support of this ride is a step in the right direction for all those who are affected by NF.
With sincere gratitude,
(Thank you for visiting my Personal Fundraising Page. Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to our fundraising efforts. Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!)