To all my fellow CTF warriors and supporters,
Today, I am reaching out to you with the same urgency that I feel in my life right now: The Time is Now to end NF.
Your past donations and involvement with the Children’s Tumor Foundation (CTF) have made a huge impact on my life. I’m asking you to join me at ctf.org/now with a donation of any size. Let me tell you how much your gift this year will make a difference.
My life’s journey has been profoundly affected by NF. I am living with NF2-related schwannomatosis, a complex condition that has shaped my life, and the lives of so many others. Around 4 million individuals around the world live with some type of NF. Perhaps you are one of them, or you know someone who is?
A major turning point in the lives of all of us who are affected by NF is best told in a story you might remember: that of Philip Moss.
Back in the spring of 2011, at the tender age of 6, Philip encountered the unexpected. Philip’s neck began to swell, which set off alarms for his parents. Despite medical intervention, the swelling persisted, prompting surgery to investigate further. The revelation was life-altering: a plexiform tumor and a diagnosis of NF1.
But Philip’s journey led him to a groundbreaking clinical trial for a medicine called selumetinib. The road was marked by initial challenges and side effects, but after six months, a transformation began. The tumor halted its growth, and over time, it receded. Selumetinib became Philip’s superpower, shrinking the tumor by 36% after one year and over 60% after nearly five years.
We all celebrated as the Children’s Tumor Foundation announced the FDA approval of selumetinib (now available as Koselugo) back in 2020, making it available for thousands like Philip, who battle inoperable plexiform neurofibroma tumors from NF1. This was the first ever – and still the only – FDA drug approval for NF.
Philip’s story is one of resilience, hope, and gratitude for the CTF-initiated research that crafted the road to drug approval. Research that was funded by your donations!
I celebrate Philip’s triumph and the hope it represents for NF patients, yet my heart is heavy as it longs for a treatment like Koselugo. I yearn for the moment when there is a breakthrough for patients with any form of NF and all types of NF tumors. As I reflect on Philip’s success, I can’t help but wish for a similar chapter in my own story.
I was diagnosed with NF2-SWN at the age of 22, just as I embarked on the challenging yet rewarding path of medical school. Two months after my diagnosis, a successful surgery removed a meningioma pressing against my brain, allowing me to pursue my dream of becoming an emergency room physician. For ten years, I practiced medicine, navigating the hurdles that NF2-SWN presented with determination.
However, NF2-SWN is an unrelenting force, and its impact on my life deepened. Deafness enveloped me, and vocal cord paralysis silenced my voice. A tracheostomy tube became a lifeline in 2013, altering the essence of how I breathe and speak. Vision problems, severe dry eyes, and a partial retinal detachment added to my intricate tapestry of challenges.
Chronic pain, vertigo, tinnitus, and severe headaches became constant companions. Complete loss of balance, swallowing difficulties, facial nerve paralysis, and muscle weakness added to the battles I waged. I endured extensive tumor removal from my abdomen and pelvis, coupled with a radical hysterectomy and bowel resection. A brain surgery in 2019, accompanied by the placement of a brain shunt and a surgical feeding tube, marked another chapter in this ongoing journey.
Despite these immense challenges, early in 2023, I was determined to travel from Maryland to New York to participate in the Make NF Visible photo shoot. I’m forever grateful that I made that trip, because my weakness has worsened significantly in the short time since, and I would never be able to make that trip today. As part of that project, I reflected on the profound impact of your support.
Each advancement in NF research, every discovery, promises hope to those like me and is a testament to your generosity and belief in a better tomorrow. So, I thank you. And I humbly ask you to continue and deepen your CTF support by donating online at ctf.org/now.
With every donation, NF research moves forward. Your gift will fuel the quest for treatments for every manifestation of NF, including my own, NF2-SWN, as well as NF1 and all types of schwannomatosis. Together, let’s create a future full of success stories like Philip’s.
The Time is for NOW for me, and for all of us living with NF. We need an intervention NOW. And your gift, your voice, is the collective action that will end NF.
The Time is NOW for the Children’s Tumor Foundation to end NF. Read more about the CTF’s incredible impact HERE. This impact is because of you – it is transforming lives and painting a future filled with hope and triumph over NF.
Please donate today at ctf.org/now to change the course of our tomorrow, and bring hope to all of us living with NF.
With heartfelt gratitude,
Nissa Novas
