Celebrate Volunteer Week with SRNA!
This National Volunteer Week, we show our gratitude for the volunteers who give their energy and talents to be a force for good. From the very beginning, we at SRNA have depended on the generosity of volunteers to bring the community together, offer support, and do the important work we do every day.
Whether you love bringing people together or reading through research studies, if you have a knack for noticing every detail or prefer to spend your time talking on the phone, there are many ways to get involved and show your support. If you are wondering if there is a role that will be the right fit for you, we invite you to our upcoming Volunteer Information Session. Learn more about the different ways you can get involved and use your talents to improve the quality of life for those living with rare neuroimmune disorders.
Read below to learn why our volunteers got involved, what they do, and how you can get involved with SRNA too!
Support Group Leaders
Not only do they lead meetings, Support Group Leaders (SGLs) hold space for questions and connection. They create an open space for listening and sharing with others who understand. Our SGLs reach out to SRNA members in their area to connect them with resources and bring the community together.
“I reach out to newly diagnosed people and to people with a new condition. I encourage them and help them find quality medical care for their needs. When not volunteering, I am the founder and executive director of a food pantry in my county. We serve 160 families per month. I love to quilt and embroider, and I have 12 grandkids.” – Ginger, Oklahoma Support Group Leader
“We already had a support group going, but then we affiliated with SRNA to help with virtual monthly meetings in 2020. After that, I got involved with the peer to peer program to help folks outside our local support group. When I’m not volunteering, I’m holding my household together. I like to read, work in the yard, enjoy visits with my three grandsons, and walk our red-heeler mix.” – Jodi, Georgia Support Group Leader
Peer Connect Leaders
SRNA Peer Connect Leaders (PCLs) offer one-to-one support to our community. They have completed a training program and are available to call, text, email, or video chat with members across North America. PCLs offer a listening ear and provide relevant resources as someone who understands the realities of rare neuroimmune disorders.
“It is important to me to make people feel connected to others with similar neuroimmune diseases. I know how hard this disease is and the loneliness and disconnect you can feel. I like the feeling of giving others hope and a listening ear. It’s been great connecting with others and showing them compassion and hope.” – Kylie, Peer Connect Leader
“I know how isolating a rare diagnosis is. I have always been very interested in psychology and how the mind works. I want to help as many people as I can to break out of the isolation and enjoy life. When I’m not volunteering, I run my own business and am a single mom to two amazing kids, a 14 year old son and 12 year old daughter.” – Selena, Peer Connect Leader
“I volunteer with SRNA to give back to my community that’s given so much to me. I volunteer by doing a little bit of everything! Communicating my story and talking with younger individuals with these illnesses would be my strong suits. Aside from volunteering, I love video games, I’m a major foodie, and I’m learning Spanish.” – Ireland, Peer Connect Leader
Walk-Run-N-Roll Volunteers
Over the years, Walk-Run-N-Roll (WRNR) volunteers have hosted events across the United States. These fundraising events support our programming and research initiatives while raising awareness and offering our community a special opportunity to connect.
“I have been involved with the SRNA since 2008 when I had my onset as soon as I got home from the hospital. Through the SRNA (then the TMA), I found several people to help me, including Deborah Capen and Barbara Sattler. I have been to several of the RNDS helped with several Walk Run and Roll events, including as Co-Chair with Barbara Sattler a walk Run and Roll in Tucson AZ in 2018.” – Julie, Support Group Leader & WRNR Volunteer
“I heard about the Peer Connect program and I knew I wanted to be involved because I think it’s important for peers to have support from others who understand what they are going through. I have also attended a WRNR in the past and knew that I wanted to volunteer to put together another event that can bring together the community for a great cause. When I’m not volunteering, I like to have game days and movie nights with my husband and our friends.” – Jennifer, Peer Connect Leader & WRNR Volunteer
We are so grateful for each person who invests their time and energy to support our mission by volunteering. Their dedication is inspiring. Thank you to our incredible volunteers!
