Who is the Children's Tumor Foundation? | Why they inspire our journey.

Who is the Children's Tumor Foundation? | Why they inspire our journey.

A young man chibi candle maker character with curly hair, for a wide cover photo in water color

At Main Story Candles, every candle starts with a memory and is poured with love, telling a unique story and bringing comfort to your home. Our family has a big, hopeful purpose too: promoting awareness for NF2, the condition that has shaped our sister Marissa's life, and cheering on the Children's Tumor Foundation (CTF), the organization working hard to drive research and to help families like ours connect with specialists and find treatment plans. In this post you'll see what CTF does, the many fun ways anyone can join in, and why this foundation means so much to us.

Why this cause is important to us.

Marissa was diagnosed with NF2 at 15. Since then she has faced nearly a dozen major brain surgeries, lost her hearing, and later lost her sight as a tumor pressed on her optic nerve. Through all of it, she has kept spreading love and inspiration to everyone she can reach. You can read her full story in Our Journey with Neurofibromatosis type 2.

Here is the part that makes us smile: when her world grew smaller, she found peace, warmth and connection in fragrance and the simple joy of lighting a candle. That little flame became the seed of Main Story Candles.

It also gave us a second, bigger dream: a cure. Not only for Marissa, but for everyone living with this condition. Comfort lifts a family through a hard day, and research changes the days ahead. As a small family business, we get to put both at the heart of our mission.

What CTF is up to (and it's good news!)

CTF calls itself the drug discovery engine for neurofibromatosis (NF), a group of genetic conditions that cause tumors to grow on nerves. NF affects more than 4 million people worldwide, and for decades none of them had an FDA-approved treatment. Here is what the 2024 Impact Report celebrates:

  • 47 years of funding NF research, with 800+ research projects funded along the way
  • 2 FDA-approved treatments for NF1: Koselugo in 2020, the first ever, and Gomekli in early 2025, the first for adults. CTF's early research and advocacy helped bring both to patients
  • 68 clinical trials in progress, triple the number from a decade ago
  • 20+ pharmaceutical and biotech companies now working on NF
  • 21 new research projects funded in 2024 across all forms of NF

And CTF does far more than hand out grants. It hunts for promising drugs, including ones shelved elsewhere, and helps move them through testing. It runs the first platform trials for NF, which test several therapies at once to save time. It also keeps an NF Registry of 11,000+ participants and supports a network of 70+ NF clinics that serve about 20,000 patients a year.

Both approved treatments so far are for NF1, and CTF's goal is at least one treatment option for every form of NF, including NF2-related schwannomatosis (NF2-SWN), the name now used for NF2. That is the finish line our family is cheering toward.

Reasons for hope in NF2

For families like ours, the NF2 work in the report is where hope gets specific. Much of it is still early, and none of it is a cure yet, but it is real, exciting movement:

  • A first drug signal. In the INTUITT-NF2 platform trial, the drug brigatinib shrank 10% of growing tumors and 23% of all tumors in people with NF2-SWN, with results published in the New England Journal of Medicine. The drug was first made for lung cancer. CTF's team science project, Synodos for NF2, spotted its potential, and the trial keeps testing more therapies.
  • Gene therapy. CTF is investing more than $1 million in genome editing research in Germany and Australia that aims to correct the NF2 gene defect behind the tumors.
  • Hearing. Funded researchers at UCLA and Stanford are studying inner ear proteins and blood markers to understand and predict hearing loss in NF2.
  • Better models. A new humanized meningioma mouse model at the University of Plymouth gives scientists a faster, safer way to test treatments before they reach patients.

Marissa lost her hearing and later her sight, and those are the exact losses we wished someone could prevent. Knowing researchers are working on them is why we have placed our trust in this foundation, and why we believe further breakthroughs can keep bringing treatment options to patients at every stage of their condition.

Join the Movement: ways anyone can take part

You don't need to be touched by NF to help. CTF has plenty of ways to jump in, whether you have an hour, a weekend or a whole year:

  • NF Walk is CTF's signature fundraising event, a family-friendly gathering held in communities across the United States. Can't make it? You can find a walker or team and donate, or start your own fundraiser.
  • NF Endurance lets you run, bike, swim or tackle an obstacle race for NF research, or choose your own challenge, like climbing a mountain. Its Adopt-a-Hero program pairs athletes with someone living with NF for encouragement along the way.
  • Your own fundraiser or Family Fund. Build a fundraiser around your own idea and invite friends, family and coworkers to join the party.
  • NF Awareness Month in May. World NF Awareness Day is May 17. Landmarks around the world glow blue and green, the official NF colors, and in past years CTF has also invited supporters to wear blue and green on May 17 and green and blue on May 22 for NF2. Even swapping a porch light to blue or green counts!
  • Volunteer or advocate. CTF also welcomes volunteers and people willing to speak up for NF research funding.

Local events such as galas, golf tournaments and poker nights vary by region and year, so check CTF's event finder at ctf.org to see what is happening near you.

Our $130, and why we're so proud of it

This year, during NF Awareness Month, we shared Marissa's story as widely as we could and raised $130 for CTF on our own. We promoted NF Awareness Month in our own way: we visited local markets and traded special edition fragrances for donations to our CTF fundraiser page.

Next to a gene therapy project worth over $1 million, $130 may look small. But CTF's report is clear that every dollar invested moves a drug forward and that none of its progress happens without supporters. A small family business with a true story and a few people who care can absolutely be part of that.

Awareness counts for more than the dollar amount, too. Every person who learns what NF2 is can become a supporter, an advocate or a walker, and research needs all three. Next year we hope to grow our fundraising goals and work with our local communities to bring Arizona even more exposure to the cause.

Where candles and our goals meet

Main Story Candles is how we share Marissa's memory and her dream. We hand-pour all our candles using natural, clean-burning wax and non-toxic fragrances. Each scent is a sweet, nostalgic one inspired by fond family memories, so every light brings a little comfort from home.

Comfort and spreading awareness are the two happy halves of what we do. Our candles are for the hard evening, the long waiting room, the family going through something like ours, and the mission behind them is for the years to come. We love that we get to offer something beautiful that also does some good.

Our promise is the same one we have always made: to curate comfort and memories, one candle at a time.

Come shine with us

If this post put a smile on your face, here are three easy ways to keep the good feeling going:

  1. Find an event or give. Visit ctf.org to find a walk, run or fundraiser near you, or to start your own.
  2. Share the story. Send this post to one person who has never heard of NF2. That is how awareness grows!
  3. Light a candle with us. Browse our candles and share a piece of our home and heart with yours.

Thank you for being part of the Main Story Candles family. Together, we can help turn a dream of a cure into a reality.

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