On May 22, 2019, the Children’s Tumor Foundation launched the NF2 Accelerator Fund, a three-pronged plan to find more potential drugs for NF2, improve testing for those drugs, and develop gene therapies for NF2. Since the initiative was announced, a volunteer committee has stepped forward to lead the way in fundraising for this important project.
Two fathers of sons with NF2 now serve as the co-Chairs of the NF2 Accelerator Advisory Committee. In the days leading up to Father’s Day, we recognize these Dads committed to fighting NF.
JOHN MORRIS
Please tell us a little about yourself.
I am a senior managing director in the global services company Accenture. I focus on the healthcare industry. My wife and I have five grown children and three grandchildren. We live in St. Louis, Missouri. Our son was born with NF2. We learned about it after he had been diagnosed with two tumors before age 10 and eventually found additional vestibular schwannoma tumors through an MRI. He is now 23 years old and living with the effects of multiple tumors, which are monitored routinely.
Why is the NF2 Accelerator Initiative important to you?
Having a child with NF2 has opened my eyes and those of my family to the difficulty of rare diseases. My hope is that we can find a way to slow the progression and ultimately eradicate NF2. I have been working with the Children’s Tumor Foundation for years, and they are taking a multi-prong approach to finding remedies for NF2. CTF has pioneered partnerships between major academic researchers and pharmaceutical companies. The NF2 Accelerator is targeting money to very specific projects including clinical trials and genetic engineering.
My view is that we need to try all avenues available to get to better outcomes for NF2 patients. I’m confident we are on the right path.
RB HARRISON
Tell us a little about yourself
I retired last year after a 33-year career with Macy’s and May Department stores. My last seven years, I was the Chief Omnichannel Officer and finally the Chief Operations Officer for Macy’s Inc. My wife Susan, and two boys Gregory (17) and Brian (15) and I currently live in Bergen County, New Jersey, just outside of New York City.
Why is the NF2 Accelerator Initiative important to you?
We first heard the term neurofibromatosis type 2 in the Pediatric ICU of Columbia Presbyterian, and since then, life hasn’t been the same.
In December 2014, our happy, healthy, outgoing 10-year-old began developing a headache around dinner time. After a few days of this, we scheduled a visit with his pediatrician. What we thought might be a simple ear infection turned into an MRI that revealed a 5cm tumor compressing the brain stem, as well as multiple tumors in the spine, brain, auditory, and optical nerves. We were cautioned that the brain stem tumor might sever his spinal cord with perhaps only a sharp movement or fall.
This began a whirlwind few days in Columbia Presbyterian Hospital. We had one day to vet the surgeon before Brian underwent 12 hours of life-saving surgery. Those were the longest hours of our lives, but when he woke a few hours later and he could talk, move his arms and legs, and ask for a puppy. We thought we were done- miracle accomplished!
The next morning, 72 hours from the news of the tumor, the doctors explained that the multiple tumors Brian had in his spine and auditory and optical nerves indicated he had NF2. Since that day, we have discovered more about this terrible disease, and have learned the terrible symptoms and problems this condition can bring to those that suffer from it. These afflictions can include loss of vision, hearing and balance, facial physical deformities, inability to swallow and death.
We, like any parents, only want the best for our children and when something is wrong, we try and fix it. Brian has NF2, so we are trying to fix it. It is that simple. We want to fix it, for Brian, so NF2 is a distant memory.
To join RB and John in supporting the NF2 Accelerator Initiative, please visit ctf.org/endNF2.
