Behind the Paul Paone Memorial 3-on-3 Tournament

From a young age, it was clear that basketball was Paul Paone’s favourite sport.  It was his favourite to watch and play. He was a member of the Westlane Secondary School basketball team, where he was a student from 1991 - 1996. In April 2005, at the young age of 27, Paul was diagnosed with Huntington disease (HD). Although the diagnosis meant things were about to change drastically for Paul and his family, he never lost his love of basketball.  

In 2009, members of the Niagara Falls Chapter were inspired by a story about another young man who had held a basketball fundraiser with great success.  The Chapter decided to host their own tournament, and given Paul’s love of basketball, it was the perfect fit. The tournament is at A. N. Meyer Secondary School each year, where students from across the Niagara Falls region fundraise to compete in the tournament.

“It’s a really important education opportunity,” said Judy Harding, Paul’s mother. “So few people know what Huntington disease is, let alone its effects. At the end of the tournament, if that group of young people have a better understanding of HD, then the event was a success.”

Paul shared his mother’s sentiments. He looked forward to attending the tournament every year, not only for the games, but for the opportunity to educate young people, who have little or no understanding of the disease.

Paul sadly passed away in 2015 from Huntington disease. This year’s tournament is in memory of Paul, his journey with HD and his love for basketball. If you would like to support the event, we invite you to make a donation in Paul’s name at www.huntingtonsociety.ca/yes-i-want-to-donate.

A group shot of the competitors with Paul at the 2014 Tournament

Paul with some friends at the 2014 Tournament

Jitter Bug: How Huntington disease and tattoos collided

Hedley Cullen’s (AKA Jitter Bug) regular visits to Incendiary Tattoos inspired a creative new fundraising idea! Hedley’s Tats for a Cure event started in 2014 with support from this tattoo shop and raised $2500. This year at Tats 2.0, they doubled their revenue, gave out 91 tattoos and served over 100 people at their BBQ.

Hedley served for 26 years in the Canadian Navy and retired due to his symptoms of Huntington disease (HD).  Upon his retirement, Hedley searched for a new community to be involved in and found Incendiary Tattoos where friendships were quickly formed. In past years, the shop artists have purchased awareness decals that Hedley was selling in support of Huntington disease. This sparked their support for the Huntington Society of Canada and their friend Hedley, who they affectionately refer to as “Jitter Bug”.

The owner Jim suggested holding an event at their shop and they connected with the South Vancouver Island Chapter to get involved. At this event, individuals donated $40-$60 and received a HD themed tattoo, whether it was the amaryllis flower, the HSC logo or new this year, the semi-colon. Patrons also enjoyed a BBQ that day!

Hedley shared his excitement about arriving for set-up that day to a line of people outside the shop, followed by another highlight: All of Hedley’s friends at the shop getting Jitter Bug tattoos in his honour. We are all so grateful for the friends at Incendiary Tattoos, who donated their space, time and talents for this event.

Hedley’s positive attitude and friendliness has inspired the shop to commit to a yearly Tats fundraiser! Tats 3.0 is being held May 13^th 2017, and the community is already excited!

To learn more about Tats 3.0 click here!

To see photos from this year’s event, click here!

Do you have a new and exciting event idea, tell us about it here! 

Our Heroes: The Exeter Hike

The theme of the Hero run/walk was introduced to the HD community this year by the staff in Chapter Development. This was promoted as a way to show our appreciation to those affected by HD and their strength while also being a fun family event through which we could reach people from the general community and grow the event. People are encouraged to dress up as heroes (whatever or whomever that may be to them) to come to the event. The first Hero themed run took place on June 4 and it was a HUGE success!

The Exeter Hike has been Exeter’s annual run/walk for 10 years and has been a staple in the HD community. Generously supported and organized by the Knights of Columbus, the Exeter Hike has historically brought in an average of $12,000 a year for the HD community. This year, due to promotion on social media and the new Hero theme, the Hike brought in a whopping $31,000!

Lindsay Groot, a key event volunteer, was a huge part of growing the Hike this year, getting sponsorships and setting up activities like the scavenger hunt, face painting, the bouncy castle, prize table, and HD swag sales while the BBQ and registration were still run by Knights of Columbus. These kids’ activities were added to create an opportunity to grow the event by bringing in families, both inside and outside those affected by HD. “I feel like people are getting ‘support fatigue’,” Lindsay shared, “I really pushed it being a family fun day”. Local heroes such as police and EMS, specifically fire and ambulance also came out to the event. Police even allowed kids and others to climb into and check out the vehicles

Lindsay created a real system for attracting sponsors by mapping the streets of Exeter and dividing into sections for volunteers to easily tackle while on a lunch break, after work, or on the weekends. Lindsay and her volunteers went through the Heroes sponsorship package that was put together by Lindsay and the staff in Chapter Development, and discussed how to “sell” it. They used their connections with businesses and tried to give ideas and options for the kinds of things the specific business could give if they did not wish to give cash. This led to over 35 prize sponsors, as well as around $3,500 in cash sponsorships.

Every time a sponsorship was received, the company logo would go up on the event Facebook page, and in return, the companies posted the event poster on their page. This was a great way to spread the word! “Facebook was key,” Lindsay shared, “lots of friends and family shared it, which brought out people from about 2 hours away!” Newspaper articles as well as radio broadcasts were also used to get the word out.

When speaking about the Hike and her wishes for it to grow, Lindsay commented, “My dream of the hike is that it will continue to be a family fun day where your endorphins are elevated from the moment you arrive until the time you get home! That there will be so many fun memories created people can't help but come back annually. I hope the following years will bring out more and more people who either want to support the HD cause or are looking for a fun day. Either way, it will lead to support, donations and awareness!”

Through the efforts of Lindsay and her fellow volunteers in putting together the success of the Huntington Heroes Hike in Exeter, they became heroes in the HD community. Thank you to all who were involved.

Niagara Chapter's First Annual "Golfapalooza" HD Classic!

The first ever Golfapalooza is on May 28th at the Niagara Falls Golf Club, hosted by the Niagara HD Chapter and it’s already sold out! Building upon the formula for success of the former Bert Sauder Memorial Tournament, this tournament is “a fun game of golf that won’t take up your whole day”.  This concept is quite appealing to many people, as evidenced by the quick fill-up. “We’ve been very fortunate in attracting some new people”, organizer Barbara Eade-Stainsby commented about the golfers.

When the committee first got together to plan the tournament, they knew they wanted to provide a laid back, fun day that wasn’t too serious. That’s when one committee member, Jim Heywood, suggested “like a golfapalooza”! After that, the feel of the day was set. The local Chapter Secretary sent out early “Save the Date’ notices to all local members and closer to the date, approximately two months in advance, personal invitations were sent to all members in addition to just over 100 people including a poster, registration form, Sponsor/Donor letter and form. Social media posts were made as well on Facebook and local Chapter members posted on their timelines. Given the high interest, the organizing committee is already giving thought to creative ways to accommodate more golfers.

Those 72 lucky people that get to be involved in the first ever “Golfapalooza” will experience a variety of competitions between the full field of golfers as well as fun competions between foursome members to keep the golfers in the spirit. Participants can purchase "passports to perks and prizes" to be eligible for chances to win golf accessories, use mulligans, and even shorten putts by a length of string.  The round of 9 holes will be followed by a BBQ and the drawing for door prizes to wrap up the day no later than 2pm.

The event is already very close to reaching its initial fundraising expectations, and the event is still almost a month away! The planning committee of Barb, John and Jim was sure to say an enthusiastic thanks to the Niagara Fundraising Committee and everyone who has supported and promoted the event. That’s how we do it here in Niagara! This new event is drawing some much needed support to raise money for Family Services and research to delay or stop the progression of Huntington disease.

“We’re so very fortunate that our event is happening during the time of year when the anonymous donor is matching every donation”. Double your impact this spring by donating to the “Golfapalooza” HD Classic, and your donation will be matched by a kind donor.

Donate here.