A visit to the ALS research lab

Last week it was our pleasure to introduce the Daher family to our friends at the ALS research lab at the Tanz Centre for Research in Neurodegenerative Diseases. Mark Daher has been living with ALS for seven years, he and his wife Asmaa, together with their 8 year old daughter Veronica and caregiver Bahia, were welcomed warmly.

Mark and Cherrie, Executive Director of ALS Double Play, went to the same high school in Markham, Ontario. While not in touch in the many years since, a mutual friend told Cherrie about Mark’s illness and they connected on Facebook.

Mark and Cherrie spoke a lot about the disease, and their shared experiences. Cherrie shared her

brother Christopher’s ALS story with Mark and Mark shared his. “I was most impressed with how positive Mark always was in our conversations,” Cherrie said, “I remember how important that positivity was for my brother as well. Living with ALS is one of the hardest things in the world, being positive while living through this disease requires superhero strength.”

Mark travels using a motorized wheelchair that he maneuvers using button that he controls with his head. He has a trach that helps him breath and a feeding tube. His family is beautiful and his daughter’s love for him is evident. While Asmaa’s strength and determination for Mark was unmistakable.

The Daher family were so pleased to meet the ALS research scientists and what they were working on in the lab. Veronica listened intently to all the researchers and was even given a little care package of fun “lab tools” to commemorate her visit. Of course, ALS Double Play brought cupcakes for everyone to enjoy after the tour because everyone needs a little sweetness in their lives

We are grateful to the lab under the direction of Dr. Janice Robertson and all the researchers that were available during our visit. They are knowledgeable and approachable, which makes learning more about ALS easy.

Our lab visits always reaffirm our confidence in our Fellowship with the University of Toronto, the ALS research lab and a future free of ALS. Thank you Dr. Robertson and all at the lab. Thank you to the Daher family for sharing their story with us. Mark, you are truly an inspiration. We look forward to the day we make ALS history.

L-R: ShangXi, Paul, Agnes, Phil, Alicia, Janice, Cherrie, Veronica, Mark, Asmaa, Bahia and Marc.