"I sometimes maybe exaggerate a little too much how well I'm doing when I'm not really, just to give people the permission to engage. You wouldn't know that
I can barely brush my teeth anymore."

After Rick Zwiep's diagnosis in August of 2022, he was quick to become a loud and proud part of the ALS community, spreading awareness about the disease at every possible turn. Today, Rick sits on the board of directors for ALS Action Canada, where he leads a community support group to uplift his fellow pALS. Rick is also part of the ALS Super Fund's advisory council, providing his patient input as to how donated funds should be allocated across the country. Join us for a conversation of science, research, accessibility, support, and what it means to be a patient-led organization.

EDIT: We stated that, "To date, more than 100 genes have been identified that, when altered, can contribute to ALS." The ALS online Database or ALSoD website lists 152 genes and genetic variants that are connected to ALS. This may include some genes with variants that have been shown to be related to ALS, but the evidence is weak. The list includes information on all recorded genes in ALSOD, and the genes have been categorized. The categorization is subject to change based on new evidence and is a consensus which may be debatable among experts.

For more information on ALS Action Canada and the ALS Super Fund, visit https://www.alssuperfund.ca/

To view the ALS Super Fund 2024-2025 Impact Report, visit https://drive.google.com/file/d/12U8As6IIAoubCv-Ih-e2bpy9IRKifS0T/view

For more information on Everything ALS webinars, visit https://www.everythingals.org/

For more information on Eric Brunner’s project, Flickering Souls: Illuminating ALS, visit ericbrunnerart.com

For more information on the ALS Therapy Development Institute, visit als.net

For more information on Brooke Eby’s project, ALSTogether, visit alstogether.org

For more information on the Northeast ALS Alliance, visit neals.org

For more information on ALS, please visit the ALS Canada website at https://als.ca/

Episode Transcript