Promoting Eye-Gaze Device in Rare Disease Community
“We had a social gathering … after the conference, and seeing how these families are involved in and actually appreciate what you did was really meaningful to me.”
Tiffany Wai, recipient of the Chapman & Innovation Grant for 2023/2024.
Project Description
People with certain neurodegenerative diseases or injuries, such as Amyotrophic Lateral Sclerosis (ALS) and Rett Syndrome, frequently experience a loss of motor control and speech, severely impacting their ability to communicate with others. Eye-gaze devices support communication for people experiencing these impairments by tracking eye movements on a screen to select and vocalize words. It is often difficult to obtain an eye-gaze device off long healthcare waitlists without previous experience using a device.
Tiffany’s project created workshops in partnership with the Rett Syndrome Society of British Columbia to decrease access barriers to eye-gaze devices. Professionals provided opportunities for people with neurodegenerative diseases to gain experience and knowledge about using eye-gazing devices to improve their chances of getting off waitlists.
Community Partner Description
Rett Syndrome Society of British Columbia’s Mission Statement: To support, educate, and empower those who live with Rett Syndrome and their families. We are driven to raise awareness and understanding of Rett Syndrome in our communities and advocate for those living with Rett Syndrome and those who support them. In addition, we aid financially in research aimed at finding a cure for Rett Syndrome.
Lessons Learned
Tiffany shared how completing this project supported her learning outside the classroom:
“I think learning how to write a grant is really important. Knowing what details I have to gather. There’s a lot more information that I have to gather with the community partner, or just simply googling on my own. And the more detail you write, the better it is. And so I think, like this is really something that I learned, as in what I have to prepare earlier, and as in what I should gather together to make sure that I’m presenting a convincing story.”
Project Outcomes
Tiffany shared how meaningful it was to witness community-engaged work in action:
“I think the feedback that we’ve gotten from the families is something that is the most meaningful to me. To me. I think like a lot of people might use some objective figures, like, Oh, how many people attended! How many people were helped!”
“I think these are important, but I have to also consider that the people that I’m serving might not be in Metro Vancouver. So it’s hard for them to travel like that. So, taking the feedback of how they felt, they felt, they know more during the conference.”
“Seeing how these families are more engaged in further activities that our community holds. For example, we had a social gathering also in person after the conference, and seeing how these families are involved in and actually appreciate what you did was really meaningful to me, and I really enjoyed that process.”
Advice for Future Applicants
For students considering applying for a CCEL Grant, Tiffany offers some valuable advice:
“I would say to be authentic and genuine in your application. Show people what you think is important, because that represents your identity and also shows people what you care about. You can’t fake these things in your lines of writing. So I think this is really important to make sure that you really know what you want. What do you want to achieve? The second thing is, I think it is important to prepare that early. So I would advise people to start it as soon as they come up with an idea and start to reach out [to community partners].”
Information about CCEL Grants
If you are a student interested in leading your own UBC CCEL project, you can learn more about the application process here. Year-round advising for grant projects and applications is available via Zoom or in-person at our office in the UBC Vancouver office from Monday to Friday. For more information about year-round advising, please email us at community.learning@ubc.ca to book an appointment.