October 4, 2025

October 4, 2025

We were only home for 2 weeks, then I was invited to join the ALS community in meeting with the federal government to request investment to develop a 5-year national research strategy. Luckily, I got to fly to Ottawa rather than drive!

The Canadian Collaboration to Cure ALS consists of representatives from ALS Societies across the country, researchers, people living with ALS, and ALS Action Canada.

The ALS BC team consisted of Wendy Toyer, Chair of PROJECT HOPE (and past Executive Director for ALS BC); Dr. Pioro, Professor of Neurology and ALS Society of BC Professorship in ALS Research at UBC; Darryl Borsato, a fellow Board member and an amazing guy living with ALS (as well as Board member for ALS Action Canada); Ian Haywood, Chair of ALSBC; and Shawn Penno, another amazing guy living with ALS (as well as the 2025 Move to Cure ALS Walk Coordinator for Vernon). Unfortunately Shawn came later so was not included in the picture below (but he’s in the one above, on the left in the purple shirt!).

I am very honoured to join this group of amazing people, hear their stories, and share our Tri’ing story. I received a very warm welcome from the entire team and am humbled by the applause I was given when I introduced myself, referring to our Tri’ing journey. I was very surprised to learn that the Chief Medical Advisor to Health Canada, Dr. Supriya Sharma (in green in the picture below), has been following our journey!  It also was wonderful to have the opportunity to briefly share our Tri’ing story with Majorie Michel, Minister of Health.

It was very interesting to learn the ‘parliamentary’ process when attending meetings with the government. And it was a privilege to be permitted into areas of the Parliament building that are not accessible to the general public – after going through security and having an escort! The people we met with were familiar with ALS and very receptive to our ask, although tempering our expectations by reminding us of the very tight federal budget. But we held strong, made our case and will continue to advocate for federal funding to help the ALS community develop a cohesive, nation-wide research strategy so no Canada is left behind.

After all our meetings, I was chatting with a fellow attendee ,Charmaine and she asked a question I hadn’t heard in a long time: “Tell me about your mom”. Well, to my – and Charmaine’s – surprise, tears sprung from my eyes. Charmaine quickly followed suit. I realized that although my mom is always with me, I hadn’t shared much about her during our entire journey. So please indulge me as I will now:

My mom was born Virginia Carkner and was adopted when she was a few weeks old. She became Marilyn Horne. She had curly red hair and it seemed her personality as a girl (and maybe as an adult!) reflected that red hair – a little firey! I was the youngest of three kids and my mom and I did a lot of things together while my siblings were at school: shopping at “Girdle” (my name for Guildford Mall), baking cookies, playing Crazy Eights on the floor by the heat register, working in our big vegetable garden. My mom often volunteered to have my elementary class come to our house for baking lessons (this was a normal thing at that time).

Along the way, sister Tammy nicknamed our mom “Lady Godiva”, or “LG” for short, as she used to suntan topless whenever she could (when people weren’t around). I never called her that very often, but Tammy did, and it stuck. She loved water skiing, snow skiing and dancing.

She always loved to sew. I remember sitting on a stool in her little sewing room with her sewing machine whirling away for hours on end. She made my niece’s dance costumes for many years and eventually made my wedding dress. She won an award at the PNE for best hand-sewn wedding dress!

When she lived on her own in her 50’s, she loved going to garage sales and finding great deals on old furniture, which she would then refinish or reupholster. She often went with our old neighbour and her long time friend, Billie. She also loved walking. Her proudest accomplishments were hiking into – and out of – the Grand Canyon; and earning the Great Walk Award by walking 70 km from Gold River to Tahsis.

Then in early 1999 she started to trip. And lose a lot of weight. On a weekly basis she’d have to alter her clothes so they would fit. On November 11, 1999, her family doctor told her she was being referred to a neurologist to confirm she had ALS. It was a total shock to all of us. Tammy and I became her caregivers as she lived alone.

She lived the next 2 years doing as much as she could. The ALS Society of BC provided all the equipment she needed, which at one time included a manual wheelchair, an electric wheelchair and a scooter so she could keep moving. Man, she loved her scooter! One day I looked out the window of my house to see her on my front lawn – she’d ‘scooted’ about 5 miles from her care facility to come visit me!

As she lost the ability to speak clearly, people often assumed she couldn’t hear – or think - very well so they spoke slowly and loudly to her. When she got fed up with this, she would slyly seem to scratch her nose with her middle finger, but she wasn’t actually scratching her nose at all. We would snicker, as we knew that whoever was talking to her was completely unaware of what she was silently ‘telling’ them. Oh mom!

In 2001, Tammy and I started a 5km run, walk and roll for ALS (this was before the ALS walks were held). We were so lucky our mom was able to join us. She was amazed by all the people who came out for the event, and so we were!

Thanks to the support from the ALS Society of BC, my mom was able to live her life the way she wanted to. We are so grateful for the times we had with her, for the smiles, the laughter, the hugs, the tears, and yes, even the middle finger! She’s still always here.

Love you mom.