NABS is attempting to get Canada’s advertising industry to not just support a GoFundMe campaign and help one of their own, but make it go viral so an expensive treatment for a childhood disease might be in reach.
The daughter of Pattison Outdoor Advertising’s Leanne Sousa, baby Chloe was diagnosed with Spinal Muscular Atrophy (SPA) after she was born in August. The disease affects a child’s ability to crawl, walk, sit up and control head movements, and impacts the muscles used for breathing and swallowing. While there is no cure, a gene therapy treatment called Zolgensma has been effective in treating SMA, but is has not yet been approved in Canada and treatment in the U.S. costs $2.8 million, considered the world’s most expensive drug. Without it, Chloe is not expected to live past 2.
“The NABS community has a long history of helping one another in times of crisis, providing a customized circle of care,” said Joan Brehl, NABS’ national board director for its allocations and services portfolio. “As the voice and champion of our industry’s human capital, we are appealing to the humanity of our community for their help. We are asking members of the media, marketing, production, and communications industry to please donate $20 and to share this important initiative with 20 friends.”
NABS will donate $2,020 to the fund, which has raised $100,000 to date, in addition to a further $120,000 donations from Labourers’ International Union of North America and other fundraisers being held in the community. It is following the model of another fundraising campaign in Toronto to cover medical costs for another baby that also had SPA, which was successful after gaining attention online and in the media – NABS’ goal is to make Chloe’s campaign go similarly viral and be just as successful. Louise Berube, director of allocations and services at NABS, reached out to Sousa, not only realizing the stress such a situation must entail, but believing NABS could rally the industry.
“We’ve tried so hard to raise the significant funds needed, and while we’ve had so much help and support so far, with fundraisers, and donations, we need more help to get Chloe’s voice heard and to drive donations,” Sousa said. “This is an extremely stressful and uncertain time for our family. With Chloe’s ongoing medical needs and appointments, we are quickly realizing time is running short, and we need help. It’s incredibly difficult to ask for help, so my heart leaped when NABS called offering to shoulder part of the fundraising stress and appeal to the industry I am so proud to be a part of.”
Berube adds she is hopeful that the campaign will also motivate a degree of help from the Ontario and Canadian Governments, or even Novartis, the company that makes Zolgensma.
