Our organization was volunteer-led for nearly 20 years, and volunteers are still the backbone of much of what we do. Our volunteers play an important role in how we connect and care for our members.
This tradition is what led to the creation of the SRNA Distinguished Service Award. This award is an opportunity for us to shine a light on our volunteers and recognize them for their passion. Volunteerism empowers individuals to find their purpose and create meaningful change. These tireless advocates spend hours outside of their job or away from their families; they make phone calls and answer emails from people in need; they reach out to their friends and neighbors for sponsorships and donations; and, above all else, they work to create a strong community for everyone affected by rare neuroimmune disorders.
None of our work would be possible without our volunteers.
Earlier this year, we asked for nominations for this award from our members. We wanted to hear from you about which SRNA volunteer had made a difference in your life. As responses came in, we established a panel to decide a “winner.” But in the end, this wasn’t about one person. Each volunteer brought something notable – something that our organization needed – something that changed someone’s life. And how do you value one act of service over another? So, the decision was made to recognize all those that were nominated that met the established criteria.
It gives us the utmost honor to announce the recipients of the 2019 SRNA Distinguished Service Award: Janelle Healy and Jay Hewelt, Barbara Nichols, four of The MOG Project members (Julie Lefelar, Peter Fontanez, Andrea Mitchell, and Cynthia Albright), our friends in Arizona (Gail Buch, Kate Krietor, Julie Barry, Barbara Sattler, and Kimberly Mazur), and Laura Martin.
Each of these deserving volunteers devoted an incredible amount of time, energy, and care throughout 2019.
Please continue reading to learn more about each of these amazing awardees.
Janelle and Jay attended a support group in Santa Monica in 2018. Janelle had a transverse myelitis diagnosis, and she and Jay drove the three hours from San Diego to meet others. From that day on they committed to being a part of our organization. They became support group leaders of their own, attended fundraising and awareness events, symposia, and made contact with individuals newly diagnosed. Janelle excels at making connections with our community, and her spirit makes her instantly relatable. Jay’s support of her throughout her diagnosis is an example for partners everywhere.
Barbara Nichols is a support group leader in the Dallas-Fort Worth area. Barbara has been involved for many years – organizing Walk-Run-N-Rolls, hosting support group meetings, participating in patient advocacy panels, reaching out to newly diagnosed people, and so much more. We are constantly amazed at her willingness to say yes to just about anything we ask and the compassion and care with which she tackles each request. In 2019, she held six support group meetings, including her sixth anniversary one. Her meetings are always education focused – often including healthcare professionals from UT Southwestern, but she always makes time to listen to others and hear their experiences.
Julie Lefelar came to us in 2018 with the goal of bringing awareness to a new disorder – myelin oligodendrocyte glycoprotein antibody disease (MOGAD). Since then, she and her fellow volunteers have made a huge difference in the world of MOG and SRNA in general through support group meetings, two Walk-Run-N-Roll events, and other fundraisers. Julie is a support group leader for the Baltimore and surrounding area; Andrea is a support group leader in Northern California and regularly hosts meetings with Dr. May Han at Stanford University; and Peter is an SRNA support group leader in the Orlando area. Cynthia organized the 2019 Maryland Walk-Run-N-Roll and was a co-organizer of the 2019 Washington, D.C. Walk-Run-N-Roll. Their commitment to our community and specifically, the MOGAD community is extraordinary.
In 2017, a few members from Arizona met on their way to the RNDS. None of them knew each other before then, but they returned home determined to work together to make a difference in their state. Since then, the group has grown, but the mission remains the same – create awareness and education in Arizona. In 2019, they did just that. They organized and held the second annual Arizona Walk-Run-N-Roll, established a new support group in the Phoenix area, and began a partnership with Barrow Neurological Institute that increased our reach.
Laura Martin has spent countless hours contributing to the look and feel of this organization by creating the beautiful illustrations you see on our website and our communications. We entered into 2019 with an idea that we wanted to change the name of our organization to encompass all those with rare neuroimmune disorders. Laura volunteered her time and skills (and still does so today) to help us have a branding that is beyond what we could have imagined. Her talent is only eclipsed by her genuine support of our cause and our community.
Our volunteers are core to our mission. We look forward to more members of our community joining us in our goal to improve the lives of families and individuals who have been diagnosed with rare neuroimmune disorders. We recognize our 2019 SRNA Distinguished Service Award winners who are exemplary of what can be accomplished by a person willing to make a difference in other’s lives.