PMC 2024 Update:

Family and Friends,

It’s our favorite time of year again. When the sun is shinning, beaches and friends merge, the cyclist are out, and YOU can directly influence Declan’s path in life and help move critical cancer research.

As most of you know, our son Declan was diagnosed with brain cancer at the age of 3. Specifically, an abnormally large pediatric low grade glioma. Declan went through 18 months of chemotherapy, 3 brain surgeries, 7 surgeries in total. He has had over 20 MRIs (I stopped counting at 20, and that was a year ago), thousands of seizures, and hundreds of doctor’s appointments. We are 5 years out, and still face significant ongoing challenges with Declan.

The past year has taught our family so much. It’s been a year full of laughter and smiles intermixed with intense behavioral and emotional struggles. As Teagan grows older we see the cognitive delays, and the behavioral roller coaster Declan resides on as an unwilling passenger becomes more apparent . Teagan, despite being 15 months younger, has now surpassed Declan in almost every way. School was hard, many heavy meetings were had, and his days had to be modified to where it became more of a play space. He is surrounded by love and the greatest intentions at school but even there, with 1 on 1 attention, he struggles.

Declan is such a sweet, loving kid. He loves all of the things that 8 year olds love. He loves vacations, swimming, splash pads, soccer, puzzles and games. He enjoys Roblox, anything Disney, Minecraft, and all things Super Mario Brothers related. He is creative, silly, and loves anything soft/cute/fuzzy/snuggly. But he absolutely HATES the way his brain tumor makes him feel. The days of him being blissfully unaware have come to an abrupt end. At the age of 8 he is grossly aware that his brain does not function like everyone else’s. Yet, he has the same hopes and dreams, and we hope for his path to be unique, but satisfying, meaningful and enjoyable.

I cannot emphasize how much brain tumors suck. Even without undergoing chemo or having surgeries life is extremely hard. Behavioral, sensory, regulatory, and emotional systems all run wild. These are the things we don’t talk about. As a family, we try to stay positive. We make lemons into lemonade. We post on social media about how much fun we have as a family, how strong both of our boys are, how far we have come! But we don’t tell you that we still haven’t found the right medication combination for Declan. We don’t tell you about having to change medications and doses on a weekly and sometimes daily basis. We don’t mention the side effects of medications. We don’t talk about how tired these meds make Declan. Or how despite his exhaustion we spend endless nights up awake with him due to insomnia, yet another side effect. And we don’t talk about the mental health struggles, that come along with a brain tumor and side effects of medications. Without too much detail, I question how much harder it can get than having an 8 year old with a brain tumor experiencing suicidal thoughts. When your entire medical teams sits around a table and gives true consideration of starting chemotherapy again as a result of mental health and not tumor growth, you start to question “What does it take to make this stop???”

This is where YOU get to be the hero! You see, it is PMC time. Last year through the Pan Mass Challenge ride we were able to, as a collective of friends, teammates and donors, fund research through Bando Labs at Dana Farber. As I write this, they are currently using Declan’s tumor DNA to study over 30 potential specifically targeted meds! Dr. Pratiti Bandopadhayay, who we lovingly call Dr. Mimi, was integral in the Day One med that was recently granted FDA approval a few months ago. This med has changed lives for pediatric low grade glioma (PLGG) patients affected by the BRAF mutation, meaning the tumor goes away. Treatment becomes curative, instead of palliative. But there is still work to be done! Dr. Mimi and Bando Labs at Dana Farber are full go for recreating this research with FGFR1 mutation!!! Research shows that approximately 75% of PLGGs have the BRAF mutation. Only approximately 10-15% of PLGGs have the FGFR mutation, like Declan’s. This research is funded by PMC donations. And we have made it so that donations that are provided to our team specifically go to The Declan Vail BrainStorms for a Cure Fund. We started off with a goal of $100,000 in 5 years, starting in 2022. We have surpassed that goal, but in the world of cancer research, that’s probably the cost of a single microscope and a few pipettes. Through our growing PMC team we hope to raise $1,000,000 in the next 5 years.

Without YOU, and philanthropic donations, none of this research could happen. You see, pharmaceutical companies can’t make profit off of the “few” afflicted. Think about it. On average 1700 kids a year will be diagnosed with a pediatric brain tumor in the US. Let’s say 200 of those kiddos have an FGFR mutation. So in the past 10 years, maybe 2,000 new cases? There is no financial gain to be had for pharmaceutical companies. And the FDA considers these tumors benign… which is the nicest way to gaslight people into thinking these are minor health problems.

The Dr’s and scientists involved in this project have also so much hope for eradicating other forms of cancer with similar mutations if they can solve the FGFR mutation battle. This will benefit not only pediatric patients, but also adult cancer patients. We could be on the precipice of something bigger than all of us, yet not possible without us.

After a recent meeting with Dr. Mimi it is so very apparent that it is the philanthropic donations that make any of this research is possible. Sad but true, we need to fund our own child’s cure. To learn more about the specific work Dr. Mimi is doing please visit her site listed at the bottom of this email, or contact us for more details.

So in two weeks I will be hopping on my bike again to trek from Wellesley to Borne in honor of cancer research. I will be among a sea of fighters, survivors, caregivers, researchers, doctors, nurses, mothers, fathers, daughters, sons, friend and family… all pedaling for a cure. Please help us assure Declan and so many others afflicted by cancer can live the lives they dream of.

Happy 2024 PMC!

This year is ONE IN A BILLION. The PMC will cross the $1,000,000,000 raised for cancer line this year!

With your help this will become a reality. Along with a cure for Declan at some point. Please read below to lear about why I ride and what the BrainStorms are all about.

This year will be my 5th PMC. And every year it gets more exciting, our family gets more involved, and we get closer to a cure.

Thank you for helping towards a bright future for all cancer patients.

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Thanks for taking the time to read our story of how our family became involved in pedaling for a cure, and how The BrainStorms were born.

In May of 2019 our family's world was turned upside down when our, at the time, 3 year old was diagnosed with a brain tumor. Declan is now almost 7 and has fought this tumor for 4 years. After 18 months of chemotherapy, 3 brain surgeries, countless medical procedures, tests, and >750 seizures- his true grit still shines through. Declan shows us all how life with cancer should be. He takes every day on with courage and a fierce determination to make everyone around him smile. Declan has taught us how to live life one day at a time.

In 2019, the summer that Declan was diagnosed, he had the opportunity to join PMC's Team Kermit as a Pedal Partner. This really opened our eyes to what the Pan Mass Challenge is all about, and how there is a community of cyclist who solely pedal for a cure. The atmosphere at the PMC, and the people that I met along the way, drew me in. I HAD TO BE A PART OF THIS COMMUNITY!!

In 2020 I joined Team Kermit as a rider and was able to do my first 3 PMCs as a member of this team. It really changed who I am as a person. The PMC, and Declan's journey, convinced me that I needed to give back to this cause who took our family under our wings when he needed help flying. Not only do we ride, volunteer, or attend as a Pedal Partner family for every PMC event, but I have also made a change in the type of nursing that I do. Last March, on Declan's 6th birthday, I started a job with Dana Farber Cancer Institute as an Infusion Nurse. With Declan's tumor being large and unable to be removed, we need a medication that could shrink this tumor and improve Declan's quality of life. Our family and friends have decided to bring together a team of riders who are raising money to research the genetic mutation, on the FGFR1 gene, that caused Declan's tumor.

And that's how The BrainStorms was born. We are brainstorming for a cure for Declan and other pediatric brain tumor patients. Not only can this research help pedi, it can also transfer to adult solid tumors with the FGFR1 mutation. Our goal is to raise $100,000 in 5 years for The Declan Vail BrainStorms for a Cure Fund, which we created this past fall. After this falls PMC Unpaved ride, we are already 1/4 the way to our goal. Our family and friends participate in all aspects of the PMC. I ride the traditional PMC and volunteer for Unpaved. Jeremy, my husband, rides Unpaved. Declan and Teagan ride PMC kids rides, and Teagan raised the most money at the Natick PMC Kids ride this past June. We are a PMC/DFCI family, and are hooked for life.

Our goal is to raise money, but also promote awareness about childhood cancer. Cancer is NOT just being diagnosed, get chemo, and on your way. Declan will fight this tumor for the rest of his life. He does physical therapy, occupational therapy, behavioral therapy, speech therapy, and gets assistance in school with these as well as math and reading support. He will never know a life without this. The effects are life long, the appointments are never ending, and we know he will be running an ultra marathon for the rest of his life. BUT, NO KID FIGHTS ALONE. We have made sure that Declan is surrounded by love and people that want to help and make a difference in his life, and other childhood brain tumor patients.

Please join me in fighting for Declan. Any donation is appreciated, and goes a long way towards a cure. By participating in the PMC we are changing lives, and your donation changes lives as well. We could not move forward without your support. Only 4 of federal cancer research funding goes towards pediatric cancers. Without funding from the public and people like YOU, we would never find a cure.

Lets kick cancer's ass together!!!

P.S. Let me know if you are interested in joining us on the road.