What inspired you to start this non-profit organization?

“I was inspired to begin a non-profit organization about six years ago, when I lost my mother Minda to Creutzfeldt-Jakob Disease (CJD). CJD is a rare and incurable brain disease which affects approximately 1 to 2 out of a million people every year (in people over 65, the incidence is closer to 1 in 200,000). In Canada, the CJD Surveillance system reports about 70 cases a year. Symptoms may vary but usually include: dementia, memory loss, confusion, clumsiness and lack coordination, jerking movements, rigidity in limbs, vision problems/hallucinations, and speech problems. There is currently no cure or treatment for CJD, and upon diagnosis it is in the best interest to keep the patient as comfortable as possible, as they typically succumb to the disease within six months to a year, or sometimes shorter. 

My mom first started experiencing her symptoms in May 2014. At the time I was living in Lethbridge, Alberta for school and the year was just wrapping up, and so as usual, my parents would drive from Winnipeg to Calgary (where my oldest brother was living at the time) and pick me up. I remember during that trip in particular, she didn't seem to have as much energy as she normally does (especially with three grandkids to play with in Calgary). One day while we were at my brothers house, I remember her walking and then experiencing vertigo which had never happened. We took her to some walk-in clinics and they had prescribed medication for high blood pressure, as well as for her thyroid as she was scheduled to have a thyroid surgery that summer. Over the next few days it was getting increasingly more difficult for her to walk, and when it was time for us to head back to Winnipeg, she wasn't able to do the drive and so her and I ended up booking a flight home. I still remember pushing her in a wheelchair just trying to make our gate on time. We got home in the evening and had her taken to the emergency room right away. They had her seen and did a few tests on her with everything coming back negative, so they had sent her home again just with prescriptions.

Everything after that and leading up to her next trip to the hospital is almost a blur to me. But there were a lot of signs now that I'm realizing were so much bigger than any of us could have anticipated. I remember having her do her signature on a cheque and she had difficulty holding the pen, and when she did start writing it was really off compared to her usual signatures. There was another time where my sister and I went for a walk with her and our dog, and I remember walking ahead with my dog and looking back and seeing my mom and sister were so far behind, I couldn't understand why she had been walking so much slower. That would have ended up being our very last walk together before she was admitted to the hospital for the last time. I woke up on a Saturday morning in June and she had slept in my sisters room upstairs because it was too difficult for her to walk down the stairs to her and my dad's room. My dad went to check on her and she was awake, but she wasn't able to move her body at all or really answer anything he was asking her. The ambulance came and she was admitted into the ICU right away. She had been in the hospital at least a few days (but felt much longer) before I heard her talk for the first time, and I remember her saying "thank you for the prayers" and "thank you for the blessings". Being the optimistic person I am, hearing that gave me so much hope, but none of us could have prepared for what was to come next. After being transported between different hospitals and seeing neurologists for CT/CAT scans and MRI tests, everything was still coming back negative. Further testing had been done and it wasn't until July that the doctor had confirmed it was CJD, which he explained was essentially a human form of mad cow disease. This was his first time dealing with this diagnosis and because her case was sporadic (meaning it came out of nowhere with no known cause), he couldn't pinpoint how she had transmitted it. In some cases it could be from consuming contaminated meat even years prior and just having it take into effect now. Upon being diagnosed, the doctors had told us she would have possibly six months to live and we had begun discussing palliative and home care to ensure her comfort. As the days and weeks went on, her symptoms quickly progressed and by the end of July/early August, we were told she may not make it to the end of summer.

My family and I spent all of our days at the hospital or taking turns in who would stay with her. During one of my stays, I had witnessed her having night terrors and jerking movements. I remember feeling so helpless, but also just keeping a brave face because as much as we were confused by everything happening to her, I couldn't imagine how much more confusing it had to be for her physically going through it. I would constantly sit beside her and just tell her of all the things we would do once she could come home, and would just keep my spirits up because even though we knew she couldn't communicate, we knew she could still hear us. Towards the end of August, my dad had been doing a stretch of nights staying with her, so one of my sisters and I offered to spend the night so he could go home and sleep in his own bed. I still remember everything about August 28, 2014.. waking up early and seeing my sister still sleeping, and seeing my mom awake but taking noticeably shorter breaths. I decided to pull up a chair next to her and just talk. I held her hand and told her it's okay if she has to go, we would all be okay, we all had each other. As soon as I was done talking, I watched her take her last breath. I couldn't believe it and woke my sister up right away to see, and I still remember seeing her run out of the room to get a nurse. Once they came back and confirmed she had passed, we had made tons of phone calls and within the hour the room and hallway was filled with all of our family and loved ones. This wasn't a surprise as the days and weeks before, we were constantly comforted by so many loved ones and friends of my mom, some of whom we hadn't seen in years. It allowed me to see just how big an impact she made in her 56 years on earth. 

After her passing, I made a promise in my heart to live for her and in her honour. When we first learned about CJD, there were very few resources and absolutely everyone we had told about it had never heard of the disease. I remember after she had passed, doing research and coming across a website for the CJD Foundation in the U.S. It was filled with tons of resources, fundraising initiatives, and they even had an annual family conference. I couldn't help but wonder why there wasn't something like that in Canada, not just for families like ours, but for those who might have to face this disease in the future. After doing more research and getting in contact with tons of people, I was led back to an individual in Canada who had lost her brother to CJD just a year or so prior to my mom. She was also extremely passionate about raising awareness for this disease, and that is when I started my journey with the Canadian CJD Association. I started by selling custom shirts with a portion of proceeds donated so that the proper paperwork could be sent to the government to have our association established. In the years following, I hosted fundraising events including our paint night, Canvas for a Cure and fashion show, Catwalk for a Cure. We followed that up with a yoga pop up in collaboration with I Am Love Project, which works with local nonprofits to raise awareness through a variety of fundraising models. We have since created our own website with resources and chances for individuals to share their stories, as well we are now a registered charity in Canada. It is safe to say that 2020 has been less than ideal for hosting any type of event, however we do have families across the country hosting virtual events with funds raised being donated towards research led by Dr. Valerie Sim and her team at the Centre for Prion and Protein Folding Diseases, based out of the University of Alberta.

Since losing my mom over six years ago, I wanted to be sure no other family went through what we did in terms of not knowing where to go for support. Since getting involved with and eventually becoming Co-Founder of the Canadian CJD Association, I have been able to connect with tons of individuals locally and internationally who are going through the same journey I have walked, making sure they feel heard. While this disease may be one in a million, it is our one in a million it has affected, and at the end of the day we want everyone to know they don't have to go through this alone.”