My name is Tammy Benson-O'Brien, and I have a 17-year old son who lives with neurofibromatosis type 2 (NF2). Since he began having symptoms at 16 months, my life has never been the same. He was diagnosed with a spontaneous mutation in the NF2 gene at age 4 via tissue from his first brain surgery. Neurofibromatosis is so very difficult, but it has also brought me a passion for advocacy, a wonderful community and a dedication to finding the joy in each day. Due to the severity of my son's NF2, we made the decision that I would no longer work outside of the home. There have just been too many surgeries, appointments, MRIs, therapies, and such to schedule and manage. The bright side is that I have been able to be home with both of my boys while they've been growing up, taking them to school, attending daytime functions, volunteering, and being with my oldest son every step of the way through his journey. NF2 has caused our son to be homebound for school at some level since the fourth grade. It has been quite a challenge for our family to learn and cope with everything this disorder has brought our way. As a family, we enjoy hiking and camping, and we are all active scouters. I love being outdoors in nature, reading, crafting, cooking, photography, and playing video games. We also enjoy spending time with our pets, a dog and three cats.
I first learned about the Neurofibromatosis Research Program (NFRP) working as an advocate with the Texas Neurofibromatosis Foundation. Advocacy is my passion. For many years, I have been involved as a volunteer for the Texas Neurofibromatosis Foundation and currently serve on their board. For the past 3 years, I, along with my affected son, have traveled to Washington D.C. to raise awareness and shine a spotlight on neurofibromatosis and NF research. We will be a part of that again this year virtually. I have also served as a mentor with the NF Young Adult Leadership Program, teaching young adults to advocate for NF research. I volunteered with the leading NF nonprofit Children's Tumor Foundation, serving for several years on the walk committee and for 2 years as the Dallas/Ft. Worth Walk Director. I have also served for several years on the walk committee of the Dallas Cupid Undie Run, a fundraiser for the NF nonprofit organization, Cupid’s Charity. Additionally, I am a patient representative for the REINS Collaboration, which works to improve NF clinical trials.
I was excited when I was nominated by the Texas NF Foundation to participate as a consumer reviewer on a grant application review panel for NFRP. I understood that research funding was extremely important, but it wasn't until I served on the panel that I understood all of the hard work that goes into moving research applications through the process. My experience with the NFRP has been immensely rewarding. The staff walked me through each step of the process and provided support. Each time I have served, it has been a smooth enjoyable experience, and I always feel heard and respected. I feel honored that I am allowed to be a voice for the NF community. Being a part of the process allows me to give back, but it also lets me feel like I am actively involved in the fight to find good treatments and cures for those affected by NF. Volunteering and serving the NF community gives me a lot of satisfaction.
The scientific researchers work tirelessly in search of viable treatments for NF. I am in awe of the dedication they have to our community. In my experience as a consumer reviewer for the NFRP, the scientists are forward thinking and always prepared to discuss any element of proposed research. They are knowledgeable and encourage discussion on topics that affect the NF population. I have always felt that they appreciate my input and value my insight on the NF community perspective. By being involved in this part of the process, I have learned so much and have even more respect for the scientific society.
Last updated Friday, March 12, 2021