​Aidan’s Gala Noir raises more than $15,000 for MLC research

The Kincardine Legion Hall was beautifully decorated for the Gala Noir fund-raiser, Saturday night, Nov. 1, in support of Aidan Chapleau of Kincardine and research into a cure for Megalencephalic Leukoencephalopathy with Subcortical Cysts (MLC), a rare form of leukodystrophy (brain disease). Aidan was diagnosed with MLC when he was just a year-and-a-half old.

The gala was a great success, raising more than $15,000 for the cause, with on-line donations continuing to come in.

Almost 130 people attended, and as they arrived, they were greeted by Aidan and were able to get a preview of his painting, “A Bird’s Eye View,” which was later auctioned off to the highest bidder, Megan Luescher, for $400.

Providing live music were The Jazz Guys: Ian Burbidge, Cam Porter, Charlie Bell and Andrew Robichaud.

“It was great having Aidan’s siblings, Alex and Liam, along with Ana, at the gala,” said Aidan’s mother, Marla. “It is lovely to witness the strong bond that has formed among them. With the family spread out around Ontario, the gala gave us a reason to get together.”

During the course of the evening, Shirley Steele and Jayne McGibney and their Kincardine Improv Team provided entertainment. Among their many humorous skits, they performed "Aidan's Song" to the tune of Joni Mitchell’s “Both Sides Now” and “Bohemian Rhapsody” by Queen alongside Aidan.

AIDAN’S SONG

Aidan thanks all those who came
To fund the research is his aim
But this has kept him from his game
We’ve looked at life that way

His beautiful smile lights up the room
We’ve heard from friends and sing this tune
At wheelchair hockey, he can zoom
We’ve looked at life that way

Netflix is his favourite view
Movies, sitcoms, more than a few
A slice of pizza, maybe two
And watch the Oilers win again

We think that Joni really rocks
Not quite like Queen, but it’s all we’ve got
His determination you can’t knock
We’ve looked at life that way

Netflix is his favourite view
Movies sitcoms, more than a few
A slice of pizza, maybe two
And watch the Oilers (Blue Jays) win again!

The Kincardine Improv Team included:
 

• Leahanne MacKay as Zoe the Influencer
• Kristina Meisenheimer as Helena the Influencer
• Steve McGibney as Alfie Romeo, the Flirt
• Jaki Mayer-Duggan as Jane Walker from the 1850s
• Sid Duggan as Paddy Walker from the 1850s
• Bruce Fenton as Stuart Vino, Sommelier
• Shirley Steele as Octavia Organizer, Stage Manager and Referee
• Jayne McGibney as Martha Ramsay, Head Chef
• Amy McGibney as Sam Anella, Tape Measure
• Andy French as Bruno
• Janice Curtis as Ima Bitta

The food, provided by chef Alex Lussier and his team of George’s on Harbour, was outstanding and everyone enjoyed the wine-pairings chosen specifically for the meal.

The intention of Aidan’s Gala Noir was two-fold: to raise awareness about MLC, a rare form of leukodystrophy for which there is no cure, and to raise funds to help with ongoing research.

The fundraising activities during the evening included:
 

• Trivia organized by Keith Colley which brought in nearly $1,000. The winner of the trivia was Kincardine District Senior School (KDSS) principal Don Burns who won a dinner-for-four at George’s on Harbour.
• Silent auction organized by Alicia Davis which included several items donated by local individuals and businesses. It was a huge success and brought in more than $3,700.
• Live auction of Aidan’s painting which sold for $400. Megan Luescher won the bidding which was very fitting. Not only did Megan watch the Chapleau kids grow up as their next-door neighbour but she looked after them each summer while their parents, Ron and Marla, worked at the pharmacy.

The Chapleau family thanks the following individuals/businesses that donated items for the auction:
 

• Jackie Johns Gourmet Chocolate
• David Patterson and Derek Regier of Re/Max
• Deb and A.J. Watson
• Sleepers Bed Gallery (Sadie Al)
• Lake Huron Home (Sadie Al)
• Old Guys Handy Man (Phil Armstrong)
• Accents (Vicki Rogers)
• Grey Matter (Mike Hueftlein)
• Verity (Nicole Ireland)
• Kincardine Foot Care and Orthotics (Dr Jennifer Sinclair)
• Pauline and Larry Dunlop
• The Doyle Family
• Bill Shewfelt (Kincardine Golf Club)
• Home Hardware (Melanie and Brad Pyke)
• Dr. Dellar-Quinn Dentistry
• First Impressions (Rachel Mackay)
• West Shore (Tonya Schmalz)
• Kincardine Legion (Teri Leslie)
• Word Squirrel
• Keith Battler
• Wilfred McIntee Brokerage (Mac Ferris)
• George's on Harbour (Alex Lussier)
• Harbour Rose Boutique (Jaye Boyer)
• Commonplace (Andrew Courtney)
• Penetangear (Darrell Perry)
• Somerhill Golf Club

“An event like this is not the result of one person, but rather a team of people,” said Marla. “We thank the Aidan's Gala Noir planning committee which included Alex and Deborah Lussier, Keith Colley, and Linda Battler, who helped us out.”

In addition, there were many volunteers who helped transformed the hall to match the elegance of the evening. Appreciation to Erin Thompson and her family, Karen Griffin of Willow and Ren for the fabulous Instagram Wall, Canadian Tire for some loaned decorations and the students of KDSS. Teri Leslie, president of the Kincardine Legion, was also instrumental in the success of the gala, as were many other Legion staff.

“But the biggest thanks of all goes to our community,” said Marla. “Not only was the evening magical and spectacular, it also proved how generous people are when there is a request. We continue to be amazed at the outpouring of love and support we felt and continue to feel.

“Despite the many challenges Aidan faces, he continues to smile and keeps his spirits up. He remains involved in activities, such as his weekly floor hockey. When family gets together, we spend our time listening to music, watching sports and playing board games.”

MLC is a progressive, debilitating, brain disorder. As portrayed in the slide show displayed in the background at the gala, Aidan's abilities diminished as he got older. From once being able to walk and run, he slowly lost his motor skills which landed him in a wheelchair. He further declined so that his only ability to move in the wheelchair, currently, is with his head. He requires assistance for normal everyday tasks that most of us take for granted, such as getting dressed, toileting, eating, etc.

If you would like to make a donation to support MLC research, you may still do so through this link: Advancing Research on the Rare Disease MLC - Myriad Canada - International philanthropic network that brings together donors, philanthropists, and organizations which will provide you with a charitable tax receipt. Ron and Marla will match donations made through to the end of November. Your help in this campaign will bring us that much closer to finding a cure.