In the typical fashion of rare disease sufferers helping each other, our story originates with the actions of yet another rare disease warrior.
With over 8000 known Rare Diseases, as a group, Rare Disease patients are not really alone; 400 million worldwide have a rare disease; together we are a force!
The day that ACMCRN was conceived, Lori Verton was listening to an interesting interview with a woman who was using her comedy acts to raise money for her rare disease called "LAM."
The story told the tale of Catherine Lawrence, a Rare Disease sufferer, who had partnered with local research professionals to fundraise for their directed studies in LAM. I contacted the physician researcher listed in the article, a Dr Bill Stanford who was so very accommodating. He helped connect me with the proper resources and network, and from that point on, our collaborative research network was born.
It took a couple of years using the fantastic resources offered by the Rare Disease community to educate ourselves enough in the process including; NORD, CORD, Eurordis, Beacon (findacure.uk.org) and others.
Soon our small Governance Board was born, with Lori Verton, Dr Terri Lewis PhD, and well known community elder, Louise Carbonneau Vermeiren as Secretary/Treasurer, Dr Lewis as VP Research and Lori Verton as President.
In 2022 the non-profit had grown busy enough that two new Directors would need to be added. We were pleased to add Eve Blackburn to the Board in Feb 2022, as VP Patient Engagement. We are in the process of adding one more Director to our Governance Team.
Our first priorities included growing our social media followers, creating and sharing patient and physician educational resources. Our communities quickly swelled to over 1600 members, a very good start for a rare disease.
Our next project was to design and establish our Patient Centered Outcome Research survey and at 500 participants, we took our first insights from our interim data. Exciting leads for future study areas have been found, and at currently 1000 participants, we will be gathering another set of Insights from the interim data soon. This is the largest survey of this kind for Arachnoiditis.
Our current projects include increasing our networking abilities, online presence via a dedicated website, undergoing a registry development strategy, and continuing with education and advocacy opportunities as they become available.
Our vision is to create an Arachnoiditis-centered professional community of patients, healthcare providers, and researchers. In time, evidence based clinical guidelines, Centers of Excellence and FDA approved treatments are in our sights.
ACMCRN is leading the Arachnoiditis community in a collaborative effort in areas of research, education and advocacy.