Our History: 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 Evolution: In the initial stages, our focus was on cultivating a strong online presence and fostering connections within the Arachnoiditis community. Through dedicated efforts, we've seen our social media following flourish, alongside the creation and dissemination of educational resources for both patients and physicians. Our community, which began as a small seed, has now blossomed into a thriving network of nearly 3,000 members – an impressive stride in the realm of rare diseases.
Gathering Insights: As we embarked on our journey, our attention turned to the creation of our Patient Centered Outcome Research survey. With the participation of 500 individuals, our first milestone was achieved, yielding valuable insights from interim data. This significant milestone has invigorated our anticipation for future avenues of study. With a participant count of 1250, we stand on the brink of uncovering fresh insights as we prepare to unveil the interim data to the public, accompanied by a forthcoming release of a poster abstract. This remarkable undertaking, including the creation of the poster abstract, stands as the most extensive survey of its nature for Arachnoiditis, serving to magnify the possibilities of groundbreaking discoveries.
A Forward-Looking Approach: Our ongoing endeavors encompass enhancing our networking capabilities and seizing opportunities for education and advocacy as they emerge. We remain steadfast in our commitment to staying at the forefront of progress.
Our Vision: We envision a future where Arachnoiditis is at the center of a professional community that encompasses patients, healthcare providers, and researchers. This collective effort is directed towards the establishment of evidence-based clinical guidelines, Centers of Excellence, and FDA-approved treatments. Our sights are set on achieving these transformative goals in the times to come.
Pioneering Together: At ACMCRN, we take pride in leading the Arachnoiditis community with a collaborative spirit that spans research, education, and advocacy. Our most recent achievement, the inauguration of the world's first International Patient Registry for Arachnoiditis, exemplifies our commitment to driving innovation. This landmark initiative unites patients, professionals, and researchers in a shared mission to propel Arachnoiditis research forward.
As we navigate the path ahead, we extend an invitation to all who share our passion for progress and compassion for those affected by Arachnoiditis. Together, we are rewriting the narrative of this condition, moving towards a future enriched by knowledge, care, and hope. Thank you for being an integral part of our journey.