Watch a video interview with Carrie and Holly at the end of this blog post.
Dear Friends,
Like many of you, my journey as an NF mom started in our local healthcare provider’s office. When I took Holly in for her six-month-old physical, I said, “I have moles, but my daughter has all these spots.” That was the first time I heard the words neurofibromatosis type 1. Then, when Holly was 5, she developed a painful plexiform neurofibroma on the back of her leg that continues to grow.
So, when the Children’s Tumor Foundation announced the FDA approval of selumetinib back in 2020, we celebrated along with the entire NF community! Selumetinib is the first and only FDA drug approved for any type of NF – and it is specifically for inoperable plexiform neurofibroma tumors, like Holly’s.
Unfortunately, after having to do two separate drug holds due to side effects, selumetinib may no longer be an option for Holly. I yearn for the moment when there is a breakthrough for my daughter, and other patients for whom selumetinib is
not an option.
That’s why I am writing to you today because the Children’s Tumor Foundation needs your help to fight for patients with NF and Make NF Research Visible.
Will you consider a gift today to help accelerate research which leads to more NF specialists, more answers, more treatments, and more hope? Thanks to Kim’s generous gift, your donation will be matched dollar-for-dollar, up to $30,000, so please act now to increase the impact of your donation.
As you know there are still no approved treatments for other tumor types, such as neurofibromas, or the tumors that occur in schwannomatosis. Tumors that cause terrible pain, hearing loss, blindness, and sometimes cancer. But with your help we can try to find new ways to fight these tumors.
Like so many NF1, NF2-SWN and SWN fighters – Holly is so resilient. She is incredibly powerful and kind. There are just so many wonderful things about her, and I am so deeply proud of her. I’m realizing that she’s going to be an adult who can advocate for herself, and I’m already seeing her do that now.
I have confid
ence that when Holly makes the transition into adult care she will be able to establish a great team of providers and keep fighting NF. Will you be with us in this fight?
Your gift today will make more stories of resilience, hope, and CTF-initiated research possible. You’ll help expand the number of CTF-funded researchers and create more breakthroughs like selumetinib.
Each advancement in NF research, every discovery, promises hope to families like ours. Will you continue and deepen your CTF support with your most generous gift today? You will fuel the search for treatments for every manifestation of NF1, NF2-SWN, and all types of schwannomatosis. Together, let’s create a future full of success stories.
You can help Make NF Research Visible and help fight NF because children and adults living with NF need an intervention now! Your gift, your voice, your support is the collective action that will end NF.
Will you please make a gift today to change the course of tomorrow? You’ll bring hope to the millions of people around the world living with some form of NF.
Thank you for joining us on this journey and thank you for helping fight NF.
With gratitude,
Carrie Beeman, with her daughter Holly
