Advocate & Support
Use your voice, your time and your talent
Use your voice
You are your own most powerful advocate. Your own voice is the most effective in relaying your story and it must be heard! Be powerful and enact change through your story, with your voice – sign on to legislation. Legislators have the power to pass bills into law that will have a direct impact on people. Contact public officials and tell them your story. Tell them that you support policies that meet the unmet needs of individuals diagnosed with rare neuroimmune disorders like yours. Call on legislators to take action. Speak up and speak out to make a difference! Change begins when we speak up and make our voices heard!
Mobilize an Awareness Day
Begin locally! Share your story with your friends, family, and the local community. Join others in your community and state who share your experience to petition your local and state government to recognize the lives of those living with and caring for those with a rare neuroimmune diagnosis and the importance of awareness days and events.
Start a walk in your area
Organize a Walk-Run-N-Roll to advocate and raise awareness about rare neuroimmune disorders. We need your leadership, enthusiasm, and support to achieve our goals and look forward to partnering with you in spreading the word about these rare neuroimmune disorders and raising funds to support our programming and research initiatives.
Learn everything about starting a Walk-Run-N-Roll in your city here!
Share your story
By bringing the faces and voices of those living with a rare neuroimmune disorder to the forefront, we can empower our communities, researchers, physicians, and governing entities to understand this rare and life-altering diagnosis better. Encourage and empower others by becoming a Hope Ambassador, joining our This is Me awareness campaign, or sharing your story on our blog.
Start a Support Group
Sharing our experiences and learning together with others who truly understand what it is to live with or care for another with a rare neuroimmune disease can be life-changing. By sharing our struggles and celebrations, learning at educational opportunities, exchanging resources or meeting at awareness events, we experience healing and comfort knowing we are not alone. Start a support group in your area to connect with others. Our own voices are powerful but just imagine what can be done when we come together as one!
To become a Support Group Leader please review our Volunteer Handbook, fill out the Support Group Leader form, the Volunteer Application Form, and the Volunteer Code of Conduct and Commitment Form.
Become a Peer Connect Leader
Do you want to provide emotional support to people recently diagnosed with a rare neuroimmune disorder and share what you have learned along your journey? Join our Peer Connect Program by becoming a Peer Connect Leader. Contact us at [email protected], we will be happy to assist you with the next steps!
