Angel Gala for SMA creates awareness of devastating disease by Julia Le Oakville Beaver Staff 13 | Friday, November 6, 2015 | OAKVILLE BEAVER | www.insideHALTON.com Spinal Muscular Atrophy (SMA) is the number one genetic killer of children under the age of two, says long-time Oakville resident and SMA advocate Cheryl Vallender. Fifty per cent of those diagnosed before the age of two will die before their second birthday. She knows the statistics firsthand, having lost her six-week-old son Max to the disease nine years ago. Her son tested positive for infantile SMA (SMA1) in his first weeks of life. "SMA affects a lot of people," said Vallender, a Sheridan College journalism professor. "One in 40 adults is a carrier of the disease, but they don't test for it." Passionate about finding a cure for the progressive neuromuscular disease that causes gradual paralysis similar to a childhood version of ALS or Lou Gehrig's Disease in those who have it, Vallender got involved in the Angel Gala for SMA nine years ago and has been organizing most of the events since. The annual gala, which raises funds to support research through Families of SMA Canada, will take place at Oakville's Glen Abbey Golf Club, 1333 Dorval Dr., on Nov. 14, beginning with a cocktail reception at 5:30 p.m. It continues with a dinner, a live and silent auction, door prizes, dancing and I grew up knowing two other people with SMA (Spinal Muscular Atrophy). I realized how lucky and healthy I was and wanted to help the new generation. It's not something that affects your intellect and it never seemed to stop me from doing anything that I wanted to. Michelle Asgarali Oakville some special guest speakers. It may be the gala's last year, however, with Vallender deciding it will be her final year at the helm. Next year would've been Max's 10th birthday and she noted the event's 10th anniversary would be the "perfect end to this chapter. It's an opportunity for us to give back to the community and fight to cure this devastating disease." Over the years, the gala has raised more than $500,000 for Families of SMA Canada research. And while progress is being made in treatment, Vallender said SMA is something not many people have heard about until they are part of the community affected by it. She's hoping the Oakville community will mobilize to support those living with SMA. Max Vallender Helping Vallender organize the event is Oakville resident Michelle Asgarali. The 31-year-old, who was diagnosed with SMA at 18 months old, started volunteering her time after learning just how many young families the disease affected. "I grew up knowing only two other people with SMA," she said, noting she recently joined Families of SMA's Facebook group and was shocked at how many young children were going through the same challenges she faced growing up. The varying degrees of how the disease has affected each child motivated her to give back to the community in some way. "I realized how lucky and healthy I was and wanted to help the new generation," said Asgarali, who was never able to walk or crawl, but uses a powered wheelchair to get around. She said she'd like others to know that people living with SMA can live normal lives. "It's not something that affects your intellect and it never seemed to stop me from doing anything that I wanted to," said Asgarali, who enjoys writing, painting and watching movies. Most things can be adapted, she said, noting she can play modified versions of some sports. The gala will also honour one child living with SMA. This year's honouree is fouryear-old Asha Buliung of Toronto, who has experienced more than any child should have to go through at her age. In her first year, she was misdiagnosed and had two bouts of pneumonia before getting a blood test that confirmed she had SMA at 16 months old, according to Vallender. With her diagnosis came support from the Ontario chapter of Families of SMA. She now regularly attends music, swimming and art classes in the community. She also goes to preschool twice a week and is the proud owner of a zoomed chair. Tickets to the gala cost $125. They can be purchased by visiting angelgala.com. Closing down sale FIREPLACE & ENTERTAINMENT UNIT TAbLE wITH CD STAND VANITIES GROUP OF SEVEN FRAMED PRINTS SOFA SETS SOF & CHAIRS This location only visit our Gallery corner of Bronte & Dundas weekdays 10-5 / Sat 10-3 Located Between cIBc & td BanK 905-847-2975 (formerly hopedale mall) South oakville Centre Classique-Decor.com 905-827-3331 fasada.ca