Advocate & Support
Use your voice, your time and your talent
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!
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.
“This is Me” is an educational awareness campaign that challenges the social issues and understanding around rare diseases & disabilities and aims to break the silence by supporting people diagnosed with rare neuroimmune disorders to tell their own stories.
The enduring vision for the Hope Ambassador project is to develop awareness and understanding about the people and families impacted by rare neuroimmune disorders. Through this project, we hope to elicit valuable insight and learning, and engagement from our community, the general public, researchers, clinicians, industry leaders, and legislative influencers on the under-recognized implications of having been diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, or TM. Your contribution will not only be disseminated to our readership and increase reach and awareness, it will also inform and grow our understanding of the diversity of these disorders.
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.