Advocacy is the act of speaking up for a cause, to make change happen – and that is what we intend to do in the SCI community. By uniting our voices we can move SCI research to the top of the agenda and increase the urgency to find a cure. Our community faces many challenges, which is why it is important to come together to make important, impactful change.
It’s time to speak for ourselves, and make real change happen.
Why be an advocate?
Even though it may not always feel like it, one person can make a difference.
You could be the reason someone regains a measure of function, or sees an improvement in their symptoms from secondary complications such as autonomic dysreflexia.
Perhaps someone you love about has been affected by a spinal cord injury – or perhaps you are simply empowered to champion for those affected in your greater community.
Regardless of your connection to the community, we are a strong one.
Every share, every event, every fundraising effort pushes forward the research that will ultimately lead us to a cure for paralysis caused by spinal cord injury, and we’re so happy to have you on our team.
Join us in the many ways one can contribute to the fight, from advocacy at the legislation level, to fundraising for research, to sharing information throughout your network and educating those around you about our fight.
What does an advocate look like?
An SCI Cure Advocate can join us in many different ways.
Our advocates range from a retired person who wants to keep busy and make a difference to a mother of a child with a spinal cord injury. A young athlete who saw a hockey teammate get injured in play, to a teacher looking for a fundraising initiative for his or her class.
No matter what their relationship to SCI, our advocates often share some powerful qualities:
Friendly and social
You’ve decided to help us make a difference, and for that we thank you.
So what’s next?
5 Steps to Advocacy
- Register with the CSRO/ASRO
We want to connect personally with all of our advocates, really get to know who you are, and understand how to empower you in your fight. We are with you on this journey, and the more we empower your effort, we know the better the outcome will be.
To sign up with the CSRO/ASRO click here.
SCI research is an ever-evolving, multi-disciplinary realm of study. You don’t have to have a medical background, but it’s important to be informed. We have created and collected informative and educational videos and articles to keep you up to date on what is happening in the research community.
Check out our most visited informational resources:
Download our SCI Companion Guide (to be repurposed from After and Beyond)
The fight for a cure won’t be won overnight. It’s important to keep momentum by setting a measurable and attainable goal as an advocate.
If you’re collecting signatures for local policy change, set a target for how many community members you’d like to reach – similarly if you’re organizing a fundraising event, consider how much similar events have raised in the past. How many people have attended, etc.
One of the most powerful ways to be an advocate is by educating others on the subject of spinal cord injury and spreading your message.
There are many ways to spread a message. Look for opportunities to meet one-on-one for a coffee with local business owners and communities leaders who may be able to provide a platform for fundraising or spreading information through literature and events.
Share your message on your social channels.
Download our free eBook for CSRO advocates on social media.
Check out our artwork library for social media.
We have many active social media campaigns. Every repost helps, and there are bigger ways to get involved. If you want to learn more, reach out by email to firstname.lastname@example.org
- Connect with other advocates.
Connecting with your community and likeminded advocates is empowering. You will see what’s possible, and can amplify advocacy campaigns by working together as a team.
There are many ways to meet other advocates, including attending local events, but one of the best ways is joining the CSRO Facebook page. Join us here.
You don’t need to be a doctor or a researcher to be an effective advocate for spinal cord injury cure research. In fact, a personal voice and story is incredibly valuable in starting this dialogue.
Reaching out to legislation starts with a powerful personal message. Most legislators are not experts on every issue, and will need a wealth of information from you and your community in order to consider your case for policy changes.
Educate your elected officials around the costs associated with paralysis, the importance of continued funding for innovative research and the impact that lawmakers’ decisions have on the quality of life of people living with SCI and paralysis.
Your outreach could involve letter writing, making phone calls, sending emails, sharing on social media, and setting up face-to-face meetings to develop relationships and influence your legislative representatives. However, being an advocate for spinal cord injury and paralysis includes more than just direct communication with elected officials.
Look for opportunities to spread your message in your own community. Speak or set up an information booth at local events. Participate in local fundraisers. Organize your own fundraiser. Consider submitting an informational article to your local community paper.