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.
“Janelle has been a very welcoming and positive support to my husband and I as we try to understand how best to help our son who has ADEM. She has been candid and forthcoming about the realities of living with TM issues. She is a wonderful listener and very knowledgeable about where to find information that we can access to better understand living with the effects of ADEM.”
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.
“Barbara has been a true inspiration to the community and has worked selflessly to create a community where folks can come and share their stories, forge lasting friendships, and listen and learn from each other, as well as the many experts who she engages to shine the light on rare neuroimmune disorders. Barbara reaches out to those who are newly diagnosed through phone calls and emails and ensures that they know they are not alone and have a place to come to learn more about these disorders.”
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.
“Julie is passionate about educating and supporting the community – always looking to raise people’s spirits, which is so important when dealing with chronic disease. Her volunteer work is very close to her heart and it has truly changed her life, and I know she hopes to make the same impact for others as well.”
“Peter has put many hours into MOGAD and ADEM information and podcasts. He goes out of his way to help people who are newly diagnosed with MOGAD and/or ADEM, finding them through social media, pointing them to the experts from the SRNA website and the SRNA information available. He truly cares about these people and helping them.”
“Andrea’s support group and partnership with Stanford University has meant so much to the people in Northern California. Her meetings typically have about 20 attendees who then get direct access to a neurologist trained in these disorders. I can’t begin to imagine the amount of education and relief that has brought.”
“Cynthia worked extraordinarily hard…and because of her efforts, everyone had a wonderful time at the events as well as being able to connect with other patients with similar illnesses. She is an SRNA Hope Ambassador as well, which reflects her dedication to others suffering with MOGAD.”
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.
“Without Gail we wouldn’t have had the Arizona Walk-Run-N-Rolls. She was instrumental in designing the first one in Phoenix and then helping in Tucson. She traveled around the state to make it a success. She is an excellent voice for SRNA in and out of our community.”
“Kate was all in from the beginning. She may seem reserved to those that don’t know her, but that’s how she gets things done. What Kate does as a volunteer is done for the benefit of the community, not for any personal accolades.”
“Julie is compassionate. She wants to bring everyone in. Her work with the Tucson Zoo led to one of the coolest Walk-Run-N-Rolls. It was amazing to share in that experience with her and to see the joy it brought her and the community.”
“Even though our support group is small, Barbara is always there for us. She is always helpful. Her wisdom and humor help make her a vital part of our community.” [Barbara also writes novels about her time as judge and donates proceeds to SRNA. Check them out here.]
“Kim’s son, Jordan, has transverse myelitis. In 2018, Team Jordan brought dozens of family and friends to the first Walk-Run-N-Roll. No one had met Kim or Jordan until that day, but by the next year she was driving to Phoenix to attend meetings with Barrow Neurological and flying across country to attend the 2019 RNDS. Her love of Jordan has led her to speak at events and help raise awareness.”
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.
“Laura’s contributions are invaluable. She creates visual concepts to communicate information and ideas in a meaningful and inspirational way.”
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.