​Aidan’s “Gala Noir” is all about jazz, joy and generosity

Aidan Chapleau (above) of Kincardine and his family and friends are hosting a “Gala Noir,” Nov. 1, from 5-11:30 p.m., at the Kincardine Legion, in support of research to find a cure for leukodystrophy.

This elegant night will include live jazz; a specially-curated, four-course tasting menu, curated by chef Alex Lussier of George’s on Harbour; and heartfelt giving dedicated to supporting Aidan and others affected by Megalencephalic Leukoencephalopathy with Subcortical Cysts (MLC), a rare form of leukodystrophy (brain disease).

“Nov. 1, we will be celebrating some amazing community spirit, compassion and hope,” say Aidan’s parents, Marla and Ron Chapleau.

Aidan (right) has been living with MLC since his diagnosis when he was just a year-and-a-half old.

“Though the disease has progressed over the years and has altered many aspects of our lives, we continue to remain positive and upbeat throughout the journey,” says Marla. “Aidan continues to enjoy watching his beloved Edmonton Oilers, his New York Jets and let’s not forget about those Blue Jays! He also keeps busy playing electric wheelchair floor hockey weekly, and goes on outings with his friends at Participation Lodge in Holland Centre.”

Funds raised through the gala will help offset the extraordinary cost - £400,000 or $650,000 (CAD) - of creating a global MLC patient registry. This is a crucial step before researchers can begin clinical studies in humans. This required registry will give scientists and researchers the data they need to move closer to effective therapies and, ultimately, offer hope for individuals and families living with MLC.

By sharing in this evening of music and generosity, you are helping make this research possible; one note, one smile, and one act of kindness at a time.

Tickets are $161.95 each; available at: www.eventbrite.ca/e/aidans-gala-noir-jazz-joy-and-generosity-tickets-1748627204039.

If you are unable to attend the gala but wish to make a donation, you may do so through Myriad Canada: Advancing Research on the Rare Disease MLC. You will be provided with a charitable tax receipt.

“Ron and I are committed to matching any donations made during the month of November to a maximum of $15,000 in order to double the impact,” says Marla. “We wish to extend our heartfelt thanks to all who have made this possible.”