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. 

Indy Go-Kart Challenges

 HSC 2015 National Symposium, Regional YPAHD Day, Hike 4 Huntington’s in BC, a couple golf tournaments in Ontario, a used book sale, and quite a few Indy Go-Kart Challenges took place this fall! Indies were held in Essex ON, Mississauga ON, Winnipeg MB, and Langford BC on September 13^th, as well as in Halifax NS on October 25^th. 

The HD Indy Family Go-Kart Challenge was created by a small group of volunteers who wanted to raise funds and awareness for Huntington disease in Canada. The first event took place in Niagara Falls, ON, where participants raised $3,000. HSC’s Indies went national 19 years ago in 1996, and they have since raised well over $1 million for the HD community. Now, as Canada's largest fundraising Go-Kart event, this fun-filled, volunteer-led day is dedicated to Canadian families whose lives are affected by Huntington disease.

An Indy Go-Kart Challenge is a great family event where people of all ages can have a great time while raising money for a great cause. Kick off the next school year with a fun day for the family!

Ride for a Cure: Straight from the Horse’s Mouth

The Ride for a Cure trail ride took place on August 29^th, and it was the 6^th year of the event! If you love nature, community, and supporting a great cause, this event is perfect for you. In the last 6 years, the event has expanded in terms of participants, supporters, and even the weekend surrounding the day of the trail ride.

When this event was first created, the Peace Country Chapter decided to focus on one big event, and using their strengths and connections in this small community, they found that a trail ride would be a good fit with their target audience and sponsors. Since then, the event has an added chili cook-off the night before the event as well as a pancake breakfast the morning after for those who choose to camp overnight.

The 20km trail is beautiful, leading through creeks and forests. Some individuals even choose to run or hike the trail instead of ride on horse-back. Every so often, there is an informational sign along the trail to learn more about Huntington disease. Organizer, Mack Erno believes that this event has brought a lot of awareness to the area, “Some even save their donation dollars specifically for our cause”.

The growing event has close to 140 riders and 250 supporters for dinner at the event. People often come from as far as 5 hours away, and Bev Heim-Myers, CEO of HSC is a regular guest. in 2015, the event even had a friend from China coming to participate! Through mostly word of mouth, their website and Facebook page, Peace Country brings together this small community to do great things for those affected by HD.

TeamHD: We Have a New Landing Page!

TeamHD had a few changes in 2015, going from the National Running Team of Huntington Society of Canada to a more inclusive team of volunteers, organizers, participants and donors. With these changes came a whole new opportunity to get involved and create events for HSC.

To take advantage of this opportunity, we wanted to create a hub for all things TeamHD, and so we are excited to present to you our new landing page! At TeamHD.ca, you can find everything you need to be a part of our team. Learn about us, register for events, follow us on Facebook, read tips for fundraising, and see a list of FAQs in case you have a question.

Most importantly, we have a way to start a new event! First, fill out our online form that asks all the important questions. Once you’re finished, the form will be submitted to us and we can go from there having all the information we need to help you! Our hope is that this makes the process more streamlined and will encourage more people to organize events in their community.

Another great thing about the new landing page is that it can be used to promote events too! If one of your friends or potential donors wants to know more about HSC events and TeamHD, sending them to TeamHD.ca can give them the information they need to become part of the team too by participating or donating to the cause.

Go check out our new landing page! We hope you enjoy it.

Event Promotion: Videos

Looking through a Facebook photo album is a great way to get a feel of how an event went and see how much fun was had by those who attended. This event season, we received a lot of great photos from organizers and participants to share with the teamHD community! From the likes and comments they got on our Facebook group, it looked like everyone enjoyed going through and engaging with the event, whether they were able to attend or not.

Here at the National Office, we have not only received photos and videos from the community (such as the Coachman’s Cove Walk and Climb to Conquer events in Newfoundland), we made some as well. Using photos and videos taken at events by staff, participants, organizers, and volunteers, we created videos for the Durham Region Flag Raisings, the Toronto GEMS Walk, and Bert’s 362 KM Run for HD!

Here are some examples of how you can promote your event:

17th Annual GEMS Walk, Toronto, 2015
2015 Coachman's Cove Walk

Videos are a great way to not only reflect on how the event went this year, but also to promote the event next year and for years to come! Using simple video applications on your personal computer like iMovie or Windows Movie Maker, you can make a photo slideshow with effects and music to go along! You can also take video clips from the event and cut and paste them to make something similar to a movie trailer. There are some great templates that can make it quick and easy to create promotional material.

Things to share in your video can include, but are not limited to:

• Date and location of the event
• Photos of notable attendees
• Games/activities offered at the event
• Fundraising total
• Testimonials
• Photos of people wearing HD swag

Do you have photos or videos you would like to share with us from any of the events this season? We would love to help you with ideas of how you can use your success this year to expand and promote for the next! For support, email events@huntingtonsociety.ca.