Get your Tutu’s! Middletown, NJ non-profit holding 5K to raise funds for pediatric cancer research
The Middletown based non-profit, Infinite Love For Kids Fighting Cancer, is gearing up for a big fundraising and fun event that is back collectively in person for the first time since before the pandemic -- it's their Tutu Trot 5K Run/Walk, which will take place on Sunday, June 12.
It's events like this one that helps in funding research for pediatric cancers.
There is so much that goes into a battle with cancer and so many people it can affect as well on the financial front as well as of course the physical and emotional fronts.
Andrea Verdone Gorsegner, who is the founder of Infinite Love For Kids Fighting Cancer, was a guest Sunday morning on 'Shore Time with Vin and Dave', which airs every Sunday from 6-8 am on 94.3ThePoint and 105.7TheHawk, and discussed her non-profit, her daughter Natalie's battle with cancer, and the importance of working together to help fund pediatric cancer research and support the child and the family of the child battling cancer.
She began this foundation while Natalie was battling cancer, at the age of 3-years old, and then has grown it tenfold over the last few years, but it began out of some of the challenges she was facing while her daughter was fighting Leukemia.
"When I discovered how underfunded research was for childhood cancer and then to find out there's only been four new drugs developed for any type of childhood cancer in the past 25-years -- actually more than that at this rate -- for a lot of adult cancers there tends to be 900 in the pipeline each year," Verdone Gorsegner tells Townsquare Media. "How is it that in this country, this world that this is possible, that you have these kids with these archaic treatments? A lot of them end up passing away due to the treatment and they're cancer-free at the time because it's just so aggressive."
Still, it's very much a struggle for parents and families watching a loved one battle a childhood cancer on all these fronts and more, and in addition to the expenses, there can be things like travel fatigue added in as well as traveling to and from hospitals for treatment.
"When your child is diagnosed with a disease like cancer -- I mean, it could be any disease -- where you suddenly have one parent who has to leave their job, it's not an option to continue working -- I don't think a lot of people realize how financially devastating that is," Verdone Gorsegner said. "Here we were, my husband and I, feeling like we're doing pretty good in life, we both have really great jobs, we're able to thankfully support our kids in the way that we want, a roof over our head, food on the table, heat, air-conditioning, all that stuff -- and then suddenly, like that, out of nowhere, we're down my salary."
They had to sell their house at the time being down a salary in the home, but then the financial struggles had a domino effect starting with insurance coverage.
"At the time, we were being covered by my insurance with my publishing company and they allowed me to pay COBRA for about six months but that was a huge hit considering I no longer had a salary, that was like having another mortgage payment and then some," Verdone Gorsegner said. "Not just that, you had all the co-pays. Every time your kid is in the hospital, every doctor that walks in that room -- you're paying that doctor's co-pay, that specialist's co-pay."
There was also the expense of medication as part of Natalie's treatment at the time.
"One of the medications Natalie had to have -- we had to have it condensed into a liquid form, we had to go to one place in North Jersey -- and that was like $300.00 a month, not covered by insurance," Verdone Gorsegner said. "There's so many expenses."
These are just some of the struggles families face as a child battles cancer.
"Some of these families -- they have to drive an hour or two, like, multiple times in a week just to get to the hospital. Imagine the gas costs, imagine the food costs doing Uber eats -- a lot of these families, they have to get hotel rooms -- and that's just the tip of it," Verdone Gorsegner said. "I know families who have to fly, who lived in Virginia and had to fly over 130 times to MSK in New York -- I mean, there's so many expenses that you just don't think about."
This is a big reason why fundraisers and events coming up like the Tutu Trot 5K Run/Walk, coming up on June 12.
"Our VP, Jim McCaffrey, he and his wife actually created this event in Trumbull, Connecticut before I even knew them. In 2016, their daughter Mia, who was in Kindergarten at the time, was diagnosed with rhabdomyosarcoma," Verdone Gorsegner said.
A classmate of Mia's was also going through a cancer diagnosis at that time as well, so Jim and his wife wanted to do something to help, and shortly thereafter Andrea connected with them.
"They had organized this 5K Tutu Trot to, not only raise some money to help their family and this other family but to also bring the community together in another way to support them and to raise awareness. They did that before I even knew them," Verdone Gorsegner said.
Mia sadly passed away in 2017.
"Shortly after Mia passed, there they were doing this Tutu Trot again, and Jim said 'we want to give 100-percent of the proceeds to Infinite Love -- I was just blown away by that," Verdone Gorsegner said.
In speaking with Jim shortly after the event that year, Andrea approached him with an idea to join forces.
"I said to Jim, I was like, 'listen, I can tell you are not going to stop fighting Mia's fight, and you're already doing so much for our foundation, why don't you join our team', and he did and so that following year, in 2018, the Tutu Trot became the Infinite Love Tutu Trot and we've been doing it since but it's always been a Trumbull (CT) event, it hasn't been in Middletown (NJ)," Verdone Gorsegner said. "So, 2020, just prior to Covid, we were like 'okay, why don't we do this in both locations now, this would be the first time we do it in Middletown', and at that same time, my dear friend Sue Funk, she is the President and Founder of the 'Hannah Duffy Foundation' in Tinton Falls (NJ) -- she's been a friend of mine since 2013 and she lost her daughter to brain cancer -- every year since her daughter Hannah was diagnosed, she had a race and it was called the 'Hustle for Hannah 5K', and like Jim and Marianne that first year was to help their family but after that everything that they raised went to the Children's Brain Tumor Network out of the Children's Hospital of Philadelphia."
Then Sue joined Andrea and Jim in putting together this Tutu Trot, which will now finally be able to be held in person after a couple of years of virtual events, which were still successful.
The in-person race in New Jersey will happen at Middletown High School South and in addition to the 5K that day, there will be all kinds of other events on-site for every member of the family.
You can listen to the entire conversation Dave Crossan and I had with Andrea Verdone Gorsegner of 'Infinite Love For Kids Fighting Cancer' on 'Shore Time with Vin and Dave', right here.
You can sign up via the links below:
Infinite Love website: https://www.infiniteloveforkidsfightingcancer.org/
Tutu Trot registration page: https://runsignup.com/Race/NJ/Middletown/teamcarolineandmiatututrot
Tutu Trot sponsorship page: https://www.flipcause.com/secure/cause_pdetails/MTQzODky
Infinite Love Facebook page: https://www.facebook.com/InfiniteLove4Kids
Infinite Love research grants funded to date: https://www.infiniteloveforkidsfightingcancer.org/research-funded.html