Losing a loved one to a neurodegenerative disease with no cure can be a heartbreaking, helpless experience for a family. In the case of Lloyd and Shirley Johnston's children, it inspired them to help advance the efforts of Alberta scientists to find more answers.
After the passing of Lloyd, who had dementia, and his younger sister Shirley, who had Parkinson's disease, their respective children decided to honour their memory by giving a special gift to University of Alberta research: the mineral rights on land in Calgary and in Springbank, west of Calgary.
"I proposed to my sisters and cousins the idea to donate the mineral rights and the revenue generated from leasing the mineral rights," said Marcia Langenberg, one of Lloyd Johnston's six daughters. "We thought a collective donation in the form of an endowment would have a longer, more sustainable impact than if the revenue was divided equally amongst each of us. This would benefit the whole family and future generations."
The Johnston Family Endowment Fund enables researchers to advance discoveries in Alzheimer's and Parkinson's diseases. The family chose the U of A not only because many of them are alumni (as well as Lloyd, '44 MD), but also because they appreciated the collaborative work of theNeuroscience and Mental Health Institute (NMHI) within the university and throughout the province.
"We all deeply value postsecondary education and research, but I decided to go this route when I saw the cooperativeness in NMHI," explained Marcia, who toured the facilities and learned about the work of several researchers with her sister, Patricia Johnston. "You never know from which angle we're going to get important insights. Hearing that these scientists were not just in isolated labs working on their own research, but that they were collaborating with each other solidified for me that this was the right decision."
Marcia also noted that the gift honours her family's link to their Southern Alberta roots, since NMHI works closely with research institutes and centres at the University of Calgary and University of Lethbridge.
Sisters Marcia Langenberg (left) and Patricia Johnston in Buller Pass, Canmore, AB.
The fund supports both research projects from faculty members and the work of trainees who are developing an interest in investigating neurodegenerative diseases. For instance, Peter Podgorny, a graduate student under the supervision of NMHI's Oksana Suchowersky, received support to attend and share his research findings at the International Congress of Parkinson's Disease and Movement Disorders in 2017.
"Conferences are a unique setting that expose us to cutting-edge research and provide opportunities to expand our curiosity about a field we're passionate about," said Peter. "Without funding such as the Johnston Endowment Fund, many students would not be able to attend. I am grateful."
Finding hope for patients and their caregivers
The members of the Johnston family wish to see a path towards a cure to Alzheimer's, dementia and Parkinson's in the near future. They also hope ongoing research will provide relief to both patients and their families.
"The anguish of watching a physically active, intelligent, socially-engaged, independent loved one lose his or her ability to move, think, communicate and make decisions is unbearable at times," said Marcia. "It is our greatest desire that a cure is found within our lifetime as we are well aware of the personal toll these diseases have on individuals and the loved ones who must watch them suffer and care for them."
Researchers at NMHI share this mission as well. The Johnston Family Endowment Fund will now help propel their projects to shed light on the mysteries that currently keep these diseases incurable.
"When we met with them, my sister and I always felt hope. It mattered to us that that they were caring, receptive and willing to share their work. These researchers are so dedicated that you know they care about the people who are going to receive the benefits of their work in the end. It's not just a scientific process."
The Johnston Family Endowment Fund was created thanks to the generosity of Lynn Gregson, Patricia Johnston, Marcia Langenberg, Rae Redekopp and Pam Dennett (Lloyd Johnston's daughters) as well as Ann Jervis, Erin Johnston and Clayton Johnston (Shirley Johnston's daughters and son).