What inspired you to start the Wiffle Ball Classic?
I have been a patient at Boston Children's Hospital for a little over 3 years now. In the 8th grade I was diagnosed with a very rare disease called Gorham Stout also known as "Vanishing Bone Disease".
The disease caused significant damage to my spine and ribs but thanks to Boston Children's Hospital (BCH) I had a successful spinal fusion surgery and recently finished medical treatment. Gorham's disease is crazy rare, I've heard only 300 cases in the world ever.
So I wanted to create a fundraiser that would give back to BCH but also an event that would raise awareness for Gorham Stout and rare disease research. All proceeds from our event benefit the Lymphatic Anomalies Registry fund at Boston Children’s Hospital. This registry is critical for those with rare lymphatic diseases as there is not a lot of information about long-term effects and outcomes or about the most effective treatments. And because the few patients with these rare disorders are spread across the globe, it's very important to gather data in a centralized registry.
What are your goals for the Wiffle Ball Classic this year and in the future?
The past 2 years the tournament has raised over 60K for BCH. This year we have an ambitious goal . We are striving to reach a 3 year fundraising total of 100K. In the future, I'd like to continue to raise much needed funds and awareness for rare diseases like mine.
Personally, I'd love when someone googles Gorham Stout in the future they find a lot of successful treatment stories and ultimately, news of a cure.
What is your favorite part of the Wiffle Ball Classic?
I love seeing all the different teams and ages showing up to support Boston Children's. Everyone brings so much enthusiasm and team spirit , it's really awesome. It's a super fun event and the bonus is we raise a lot of money for a great cause. I also love the Boston Children's connections in our community. I hear many stories of why people participate and many players have a connection themselves to being treated there or a friend or family member who received great care at BCH. We are so lucky to have this type of medical care so close to Hingham.
What is one thing you want people to know about the Wiffle Ball Classic?
Anyone can play! We have divisions from Kindergarten through Adult. We have teams that are just looking for a fun time and others that are "in it to win it". It's fun for everyone. Don't be afraid to sign up, you will have a blast!
What is your favorite memory from growing up in Hingham?
Growing up on Whitcomb Ave. We played street hockey non stop, man hunt every summer night, it has been the absolute best place to grow up. And so many of my neighbors help out with the Summer Wiffle Classic too. They volunteer, play, help us get donation/raffles. All of our volunteers are awesome!
Who do you find to be the most inspiring person in Hingham?
This is a tough one. There are so many inspiring people in Hingham but I'll mention just one here. Dan Ventresca, who doesn't live in Hingham currently but he grew up here. Dan co-hosts the Wiffle Ball classic with me. He also has Gorham Stout disease and was treated at Boston Children's. Dan is older than me but he was diagnosed when he was around the same age and at Hingham High School. He has been a great inspiration to me to see how well he is doing today. Also, he's just a great guy and love sports like me. So we have a lot more in common than Gorham Stout. Dan and his entire family are a big part of the Summer Wiffle Ball Classic each year. We couldn't do it without them.
If you could pass along one message to your Kindergarten self, what would it be?
Don't be afraid to try new things. You never know what might come of it. After my surgery, I couldn't play hockey and lacrosse anymore. It forced me to try new things and that can be a good thing too.
What do you love most about Hingham?
It's such a great community. I love how so many people know each other and are willing to help others. Like with the Wiffle Ball Classic, people I don't know - sign up, donate, give their time. It's really spectacular!
Favorite local meal?
Easy - Euromart Italian!
What is one thing on your bucket list?
I'd love to ski in Colorado
Do you have a hidden talent?
I love to cook. Probably the best cook in my house , no offense to Mom and Dad!
What's one thing people may not know about you?
I'm great at Karoake - just sayin
I have something called KLA. It is a rare anomaly just like yours. It took 6 months for doctors to diagnose me. It was a long road. I want to thank Children’s of Alabama, and I would like to thank Dr. Adam’s out of Boston Children’s Hospital.