Nissa's 100 Fighters Challenge

Hi all. May is NF Awareness Month and May 22nd is NF2 Awareness Day. This is the genetic disorder that I have and that has altered the course of my life forever. It has also had a significant impact on the lives of my family and friends. NF is a collection of genetic disorders that cause uncontrolled growth of tumors on any nerve in any tissue in the body with an affinity for the nervous system. There is currently no effective treatment or cure for any form of NF. Patients are left with devastating symptoms like hearing loss, loss of balance, pain, headaches, significant dysfunction, weakness, paralysis, psychological trauma, and more. The few options available, such as surgery, radiation, chemotherapy, or watch and wait, are ineffective at stopping tumor growth and all have negative or risky consequences. Because of this I have become passionate about joining the fight to raising awareness, critical funding for research, better care and treatments while educating, and creating understanding and support for the patients and families enduring this horrible disorder and in honor of this passion for advocacy along with my very personal experience, I am fundraising for NF2 BioSolutions, the only non profit organization dedicated solely to finding a cure for NF2. 

I raise awareness so that others living with NF can know that they are not alone. For a long time, I felt as if I were the only one in the world with NF2. It was an extremely lonely and isolating time.  I don't want others to have to go through what I did. The psychological impact of NF2 can, in many ways, be more severe than the physical devastation. I share my story and advocate to increase the visibility of what living with this disorder is really like. I've joined with NF2 BioSolutions to help increase awareness, find a cure, and provide the help and the hope that is needed.

The purpose of NF2 Biosolutions is to find a cure and effective treatment for NF2 through research, supporting gene therapy, and other advanced technologies like immunotherapy. I am so proud and privileged to be a part of something so groundbreaking that will change the world; a world without NF. Thanks to the hard work and dedication of the entire team of volunteers at NF2 BioSolutions, it is very possible. Please join the fight and support this important cause and this amazing organization by donating, if you can,  continuing to spread awareness, and sending prayers for wisdom, favor, and continued success. Thank you so much for your continued support, care, and compassion. This has so much meaning to me, my family, and millions of people who dream of a world free of NF/NF2.
Let's bring NF/NF2 to an end.