You don't have to start a nonprofit or present to the National Institutes of Health to do important advocacy work for a neurologic disorder that has affected your life. You can start small, such as by writing a letter to your representatives in Congress or your state legislature, helping with a fundraiser or special event, sharing your story on the website of an advocacy group or foundation, or joining a peer support network.
“There are limitless opportunities depending on your background, skills, capabilities, and how much energy and time you are able to invest,” says Svetlana Blitshteyn, MD, a neurologist specializing in autonomic disorders and director and founder of the Dysautonomia Clinic in Buffalo, NY.
Follow these tips to get started.
Look locally. “Reach out to your local affiliates, chapters, or foundations to find out about upcoming events and advocacy opportunities,” says Sarah Waters, MSW, program and client services manager for the Epilepsy Foundation of San Diego County, who also has epilepsy. “If you can't find a group in your area, many organizations that work with people who have neurologic conditions have virtual platforms. Many of us can't drive, including myself, so virtual opportunities for volunteering and advocacy make it more accessible.”
The National Institute of Neurological Disorders and Stroke also maintains a large online catalog of patient organizations. While these are mostly national groups, you can connect with them to find local affiliates.
Connect with the American Academy of Neurology. The AAN has an online Advocacy Action Center where you can learn about key issues in neurology and easily contact state and federal legislators. The AAN is also building an advocacy network of patients, caregivers, and neurologists to make the case for improved care for people affected by neurologic disease.
Do what you do best. Did a neurologic diagnosis force you to scale back or give up a demanding legal career? Many nonprofit organizations can use volunteer legal help. Were you a writer or public relations executive? You could volunteer to create newsletters or fundraising communications. Have a background in health, wellness, or fitness? At the Epilepsy Foundation of San Diego, people with epilepsy and family members have led workshops on tai chi, yoga and mindfulness, creating inspirational collages, and nutrition.
Start training. Many local and national organizations offer virtual or in-person education on how to be an effective advocate for your disease community. You also can pursue training in other skills. “We have had volunteers get trained in seizure first aid and then come back to lead workshops for us,” Waters says.
Volunteer for research. Not all research studies require you to go to a medical center for blood draws, imaging, and other tests. As California resident Bart Narter, who has Parkinson's disease, found, in some cases you can help just by filling out questionnaires or surveys. “Start small,” Waters says. “One simple call or email is the first step. Then you can try going to an event for volunteers, see if you like it, and go from there.”
“You can do as much or as little as you're able,” Dr. Blitshteyn adds. “But no matter how much you're able to contribute, it helps to achieve great things.”
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