Information Resources
American Brain Coalition: a unique collaboration supporting efforts that will lead to improved treatments for all Americans who are affected by brain disorders.
American Brain Foundation “promotes and invests in research across the whole spectrum of brain disease. We believe that when we cure one of these diseases, we will cure many.”
GuideStar: nonprofit data and insights
National Institutes of Health (NIH)
National Organization for Rare Disorders (NORD): Along with its more than 300 patient organization members, NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
WebMD.com/brain/mal-de-debarquement
MdDS Merchandise
Find MdDS themed items on Zazzle, the MdDS Foundation’s volunteer-managed online store. Raise awareness with buttons, t-shirts and everyday items including note cards and greeting cards.
Shop Rocking Candles and up to 50% of the shop’s proceeds will be donated to the MdDS Foundation to support research.
Opportunities to Raise Awareness
The American Brain Foundation invites you to share your personal story of how brain disease has impacted you. https://www.americanbrainfoundation.org/share-your-story/
Brain & Life magazine wants to hear from you! Patients, caregivers, and family members are welcome to submit their essays for publication consideration. The official publication of the American Academy of Neurology (AAN) is distributed in neurologist offices and by subscription. See the Essay Submission guidelines here: https://www.brainandlife.org/about-us/information-for-writers/
The National Organization for Rare Disorders wants to highlight the incredible people who are helping to improve the well-being of individuals living with rare diseases, and their families. Everyone has their own story to tell, and they want to hear yours! https://rarediseases.org/share-your-story/
Your favorite local news stations, radio programs and community newspapers may be interested in your story! From the pitch to “My story got covered!” EveryLife Foundation has great tips and a video on how to get your story told by your local media. https://everylifefoundation.org/local-media-toolkit/
Contact us if you have recommendations to add to this list.
