On Monday, November 14, in New York City, during the Children’s Tumor Foundation 2022 National Gala, Michele Holbrook will be honored as the 2023 NF Ambassador. This award is bestowed upon an individual with NF to recognize their courage living with the disorder, their personal efforts to further the Foundation goals of research, public awareness, and patient support. CTF is committed to supporting NF patients throughout their life, at all ages, and the role of the NF Ambassador is evolving to reflect that. We asked Michele to tell us more about her journey.
How did you first learn about your diagnosis?
I was in my late 20s and began experiencing pain and mobility issues. I thought I was having a resurgence of an old sports injury. I went to an orthopedic surgeon who performed an MRI and a tumor was found at my L4/L5 in my spine. I was referred to a neurosurgeon who then informed me I had neurofibromatosis. I eventually traveled to the University of Alabama, and met with Dr. Korf, who diagnosed me with schwannomatosis.
How does living with schwannomatosis impact your life?
NF is unique in that it causes constant interruptions in my efforts to care for and support my family, my friends, and my work. I continually require trips to Jacksonville for testing and regularly require surgery to remove tumors as they grow and cause interference in my ability to function. I also have had to modify almost every aspect of my life as a result of the tumors.
As a further example, I was an avid runner and now I am not able to participate at the level I enjoyed previously. This has been especially concerning as the more fit I can be, the better I tolerate the surgeries and recovery processes. Pain is also an enduring problem that interrupts my quality of life, and the pain is there 24/7. And some of it is debilitating with no real solutions.
Any recent milestones or causes for celebrations recently?
The most exciting thing to happen to me recently is being named the Children’s Tumor Foundation 2023 NF Ambassador.
What’s the most difficult obstacle you’ve faced? How did you overcome it?
The loss of my only child was the most difficult obstacle I have ever had to endure, add that with NF, caused a lot of emotional and physical pain. I overcame it by trusting God and leaning on my local NF community and support group. My go to verse is Genesis 50:20: “What you intended to do to harm me, God intended it for good and for a purpose to save the lives of many people.” I want to raise awareness for NF to find a cure for the younger generation and save lives.
What’s the best piece of advice you’ve ever received?
“Never look in the rearview mirror because all you will do is crash.” We all experience adversity in our lives. And certainly, we all made mistakes, but we need to keep looking forward and pressing on.
Why did you get involved with the Children’s Tumor Foundation?
Once I was finally diagnosed, I was stunned by the rarity of it all. I became involved with the Children’s Tumor Foundation to help bring this disease into the spotlight, raise awareness for the horrendous consequences of the disorder, and to help raise money for research. I was particularly thrilled to learn that CTF is the number #1 non-profit for spending money collected on research into the disease.
How did you feel when you found out you were the 2023 NF Ambassador?
I am ecstatic to be tapped for this very important role in CTF. Advocacy and getting information out to others has been a huge part of my work for CTF here locally. Becoming the Ambassador is a very logical and thrilling extension of the work I have been trying to do for several years now. I am also profoundly humbled to know you think I am the woman for this job. I look forward to meeting and (hopefully) exceeding the expectations you have for me as I carry out my role with and for the organization.
What are you looking forward to (as NF Ambassador)? What are you hoping to bring to the NF community?
I am looking forward to meeting others, especially the children and their family members, sharing my story with them and letting them know we will get through this together and with strength and courage. I am also looking forward to speaking on the Children’s Tumor Foundation platform as the 2023 Ambassador to educate those uncomfortable with NF and educating those who do not know what neurofibromatosis is. I want to be the advocate in front of the US Congress, its relevant committees and venues. Hopefully, the more education and awareness, the more research dollars will become available.
Is there anything else you want to add?
I feel very blessed to have strong faith and a rock-solid relationship with God. Having schwannomatosis has helped me further that faith. I truly believe that if God can bring me to it, he will bring me through it. In my work to help create awareness of NF and raise funds for research, I have been blessed to meet so many other patients and family members who also deal with this rare disorder every day. As NF Ambassador, I look forward to the opportunity to support, educate and encourage those I meet to be brave, be bold and to be “auxiliary ambassadors” with me in our cause.
