During this SMA Awareness Month, Cure SMA recognizes all SMA community advocates – individuals with spinal muscular atrophy (SMA) and their families – who are raising awareness about SMA and advocating for SMA community priorities throughout the year.
Cure SMA advocates play a crucial role in shaping policy and raising awareness. Cure SMA spoke with one of those advocates, Viola Dwyer from Pennsylvania, who recently organized her own meetings with her federal legislators to educate them on the caregiving needs of the SMA community. She shares her experiences, insights, and the impact of her advocacy efforts in this enlightening Q&A:
Would you please introduce yourself?
My name is Viola Dwyer. I live in the Philadelphia area with my husband and dear cat, Pippi. I also work full-time in HR and Recruiting and live with SMA type II.
What motivated you to start engaging in advocacy work with Cure SMA?
My husband and I run a YouTube channel called “The Ginchiest” with the aim of improving the quality of life for those with disabilities. Becoming a Cure SMA advocate was a natural next step in that mission.
What steps did you take to set up a virtual meeting with your congressional office?
I worked very closely with the Cure SMA staff who did a phenomenal job at guiding me through the process, from email templates and letters to appropriate responses when getting the expected re-scheduling requests.
Did you face any challenges when organizing these meetings? If so, how did you overcome them?
Some representatives just did not respond and others kept rescheduling the meetings. I kept on top of those who did respond and eventually had meetings scheduled.
How did the congressional offices respond to your advocacy efforts and the information you presented?
They were surprisingly very curious about SMA and my lived experience. One office even requested an additional meeting to understand more of our unique community’s challenges!
How has participating in this form of advocacy affected you personally?
I felt heard and hopeful. There is some very exciting and inclusive legislation that could get passed and I now feel I took part in making it so.
What advice would you give others who want to do the same?
Just do it! Cure SMA makes it very easy.
How did SMA awareness impact your advocacy experience?
Sharing my SMA experience made me feel empowered.
For those who are interested in sharing their SMA story with their legislators, check out Cure SMA’s Advocacy webpage or reach out to [email protected] for additional information.