Advocate
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 or encourage and empower others through sharing your story on our blog. 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 local community. Start a Walk-Run-N-Roll in your community to raise awareness of these rare disorders. 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 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 neuro-immune 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.