Why we raise money for NF… I am turning 17 in a few weeks, and my family and friends have been on a mission for more than 14 of those years. Since the day I was diagnosed with Neurofibromatosis Type 1 (NF1), my family has never stopped advocating and raising money to support me. 

Neurofibromatosis, pronounced neuro-fibroma-tosis, is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time. Many variables of NF may result in cancer, deformation of bones, scoliosis, and learning disabilities.

Aside from more common NF symptoms, I have a plexiform neurofibroma. This is a complex, inoperable tumor involving areas of my head, brain, and face. I have had to endure multiple surgeries and will continue to need surgery if we don't find a treatment. I have been lucky enough to be one of 23 kids selected to enroll in a clinical trial at Dana Farber Cancer Institute.

For the past 4 years, I have been taking an investigational oral chemotherapy drug twice a day, daily. Initially, my tumor shrunk by 30% after 2 years; within 6 months, it grew back when I had to remain off the medication as part of the trial. It was determined that I was a "responder" and I could reenroll for another 24-month period.  To date, my tumor has continued to shrink and remain stable at times. However, as this trial period comes to a close, my family is discouraged because our health insurance will not pay for the medication which will cost thousands of dollars a month. since it isn't yet FDA-approved.

Unfortunately, this means that I may have to switch to a new chemotherapy medication that is new and the first and only FDA-approved drug to treat my tumor. I'm nervous because this means my body will have to adjust to the effects this medication may have on me, like hair loss, additional nausea, rashes, skin infections, a lower immune system, etc., and everything that I thought I got over after being on my current medication.  

Once again, my family and I are asking for support to help raise money for NF1. I believe that our efforts have led to the first-ever FDA-approved drug treatment for the type of tumor I have, but I'm not yet sure it will help me! The current drug I am on we know will, but it has to become FDA approved so others like me may benefit. Any money raised will help further fund research and clinical trials to find treatments and hopefully a cure! .

On behalf of my family, I want to thank everyone for making this journey that much easier. I'm just a kid trying to live my best life, but as I get older, I am able to see the impact my diagnosis has had on them and the need to continue to raise money to support research.

Here is one of many publications that I have been featured in. https://www.brainandlife.org/articles/new-research-more-options-neurofibromatosis-type-1