SRNA volunteers are some of the most powerful members of our community. These individuals dedicate their time, energy, and resources towards advancing our mission of supporting individuals and their families diagnosed with rare neuroimmune disorders. Were it not for our volunteers, SRNA would not exist. For almost 20 years, SRNA was an organization operating solely on the hard work of volunteers!
Through our “Volunteer Spotlight” column, we honor and share our gratitude to some of the amazing people in our community who are the fabric of SRNA.
We are pleased to honor Heidi Bournelis. Heidi, and her husband Nicholas, are organizing the 2018 Walk-Run-N-Roll in NE Ohio. The event will take place on April 29, 2018 in Canton, OH at Veteran’s Park. Heidi held a fundraiser during Thanksgiving. This is the first Walk-Run-N-Roll for NE Ohio, and SRNA is excited for the opportunity to bring together our members in that part of the state. This would not be possible without volunteers like Heidi.
We want to thank Heidi for her hard work and dedication to our mission and increasing awareness about rare neuroimmune disorders!
How did you first learn about and become involved with SRNA?
My family and I first learned about SRNA when my daughter, Alexis was diagnosed with AFM in November 2016. She had just turned 3. We were introduced to SRNA by Alexis’ neurologist. He suggested it to learn more about her condition and thought it would be a great way to find support.
What made you decide to become a volunteer?
The reason I decided to become a volunteer was because we just wanted to find a way to give back to SRNA. We wanted to be able to raise awareness for AFM and the many other conditions that SRNA supports. I figured if Alexis can wake up and deal with everything that she has to deal with, and with a huge smile on her face, then why can’t we give back and help in some way.
What are your goals as a volunteer?
My goal as a volunteer is to raise funds to go towards research for Transverse Myelitis, ADEM, AFM, NMOSD, and ON. We would like to be able to help other families struggling like we were and let them know that they are not alone; let them know there is a community here to help them.
As someone whose life has been impacted by a rare-neuro immune disorder, what does the mission of SRNA mean to you?
The mission means so much to me. Over a year ago, we really had nowhere to go for help. We were going from doctor to doctor trying to figure out what was wrong with Alexis. When she was finally diagnosed, and her doctor introduced us to SRNA, we were amazed by the support we received from other families that had some form of Transverse Myelitis. They really are like a second family that we care for. That’s just what people in SRNA do, they take care of each other and their families.
I am really excited that we are starting a walk here in Ohio to be able to raise more awareness in our local community. Our hope is to raise money that will go towards research and to advocate for families.
What advice would you give someone who is reading this and thinking about becoming a volunteer or Support Group Leader?
Some advice that I could give to someone thinking of volunteering for SRNA is to just take your time and we are here whenever you are ready to take on a role. You don’t have to start big. Maybe just start by going to a support group or just listening to someone who is having a hard time. We all have a part to play in this community. It doesn’t matter how big or small that part might be. We are all in this together!