Terri chaston, Cofounder of the Canadian CJD Association

Terri is a wife, fur mom to two chocolate labs, special aunt to five nieces and nephews, and a home textile designer. After the loss of her brother Mike Smith to sporadic CJD in June 2011, she felt something needed to be done to help Canadian families who had lost a loved one to CJD not feel so alone. It was not long after the loss of her brother that Terri started her journey to create a place for families to feel secure, safe, and able to speak with others going through or who had gone through a similar experience. It was then that the Canadian CJD Association was born.

Terri reached out to the CJDISA, who quickly helped to take on the cause and connected her to knowledgeable people in the research and health care field that deal with prion diseases, including CJD. Introductions were made to Dr. Valerie Sim, who is the associate professor at the University of Alberta, and Rolande D’Amour from the Canadian CJD Surveillance Centre. It was then that Terri began reaching out to other Canadians through social media and eventually connected with Michelle. Seeing how they each shared the same passion and dedication for the cause, lead Terri to ask Michelle to be her Co-Founder. 

Terri has and always will have a dedicated place in her heart for Canadian families who have a loved one facing CJD. Since her journey began, she has helped over 75 families connect with the appropriate health care professionals, while also being there to listen and have them express their feelings with someone who can understand. In 2017, Terri teamed up with Mariana Camargo, who had also lost a loved one to CJD. Together, they held the first walk in Canada to raise awareness for CJD in Toronto. Earlier this year, paperwork was submitted by Terri to the Canadian government to have the Canadian CJD Association designated a registered not for profit charity.

Terri’s Inspiration: her brother, Mike

Mike Smith was a young father of 5 children all under the age of 10 when he passed away from Sporadic CJD.  He had his whole life ahead of him, with plans to teach his children about all the things he loved the most.  He loved his family, to hunt, to fish, was an active volunteer with the local chapter of the Canadian Coast guard, he loved to laugh and play practical jokes. Mike was a great father, something that his children although young when he passed remember so lovingly about him today.  Of all my brothers’ accomplishments his children were his greatest pride. When Mike was volunteering with GAMARU the local auxiliary of the Canadian coast guard in our area he was referred to as “eagle eye” as often when they were out searching for a lost boat he was the one that located them first. 

He was the younger brother to Terri who for most of his life he liked to tease and torment, but under all of that she knew that he loved her and would do anything for her. Mike was the only son to Peter and Bonnie, he was a young man full of life who was taken well before his time.  He is deeply missed and this association has been formed in his memory and the memory of all other families affected by CJD. I know that he is watching down and grateful that we are keeping his memory alive every day. 

Michelle santos, Cofounder of the Canadian CJD Association

Like most families who are told about CJD, I had no idea what to expect. I’m the youngest of five kids and am known to be optimistic and very happy-go-lucky. I, nor my family – could ever prepare for the devastating journey ahead. After my mother Minda began experiencing common symptoms, most notably vertigo and high blood pressure during our vacation in Calgary in May 2014, we had her seen at a clinic right away. She had been sent home with medication, but her vertigo quickly progressed, to the point where she wasn’t able to do the drive back to Winnipeg and we booked a ticket home. After weeks of tests (all of which initially came back negative), and being in and out of the hospital, my 56 year old mother was diagnosed with sporadic CJD. Most patients diagnosed are given about six months to a year before succumbing to the disease, however due to the quick progression of her symptoms, we were told she had possibly a month to live. On the morning of August 28th, 2014 – I could tell my mother’s breaths were getting shorter, so I pulled up a chair beside her and let her know that it was okay if she had to go, because we all had each other. It was then that I watched my mother take her last breath, and made a promise in my heart to live for her and in her honour. 

I initially started fundraising for the CJD Foundation in the U.S for my birthday on February 4, 2015. Shortly after, I noticed the gap there was for CJD awareness in Canada, and decided to look into what was being done here, which is when I crossed paths with Terri. After realizing we had the same passion for raising awareness for CJD research, I decided to get involved through hosting fundraising events and eventually became Co-Founder of the Canadian CJD Association in 2016. Since then, I have held fundraisers such as our paint night, Canvas for a Cure, and more recently, Catwalk for a Cure; a fashion show to feature clothing designed by myself in support of the association. Despite having gone through this heartbreak, I have made it one of my biggest goals to continue raising awareness for this disease to one day find a cure. I am looking forward to helping as many people as I can and in any way I can.

Michelle’s Inspiration: her mom, minda

Minda Santos was born on December 21, 1957 in the Philippines. She grew up with 12 siblings, and eventually had a large family of her own. Together with her husband Romeo, they raised five kids – Romind (Feliz), Dianne (Mark), Justin (Tina), Rhoda (Jason), and Michelle (Vince). She absolutely loved her family, socializing, and finding good deals when shopping - but above all, she had a special place in her heart for her grandchildren. Minda loved the time she would get to spend with Romind’s kids, Asher, Rainn, and Mia Fe during trips to Calgary, or when they would come visit Winnipeg. At the time she was diagnosed, her daughter Dianne was expecting her first son, Cameron. Although she never got to meet him, she was extremely thrilled to be a grandmother once again, and would be excited to meet her later additions over the next few years; Romind’s youngest son, Hiro Minda, Justin’s first son, Jaiden Nhu, and Rhoda’s first daughter, Sophia Melissa. Mama Minda’s contagious smile, wit, and personality continue to shine through each of her children and grandchildren to this day.

dr valerie sim, Researcher at the university of alberta

I first became fascinated with prions when I learned about them as a student in university. How can a protein cause an infectious brain disease? Then in medical training, I met my first patient with Creutzfeldt-Jakob Disease. Suddenly, there was a human face to this horrible disease. Since then, I have devoted my career to the science of prions and to the care for patients and families affected by prion diseases. As a prion scientist at the University of Alberta, Centre for Prions and Protein Folding Diseases – I run a research lab where we investigate prion biology and test treatments. As a clinical neurologist, I help diagnose and care for patients, and educate health care providers and families.