It’s a big deal to decide you will donate 100 percent of your book proceeds to a nonprofit. But it’s not as hard as trying to find the right nonprofit to receive your spoils. There are so many good ones just in the world of MS research and support.
It took me some soul searching to pinpoint the one I wanted to help.
It became obvious to me that their support for writers who’ve published memoirs, anthologies, and other kinds of literature to help their peers in the MS community made The Accelerated Cure Project (ACP) the perfect choice.
What is the ACP?
This MS-focused nonprofit organization works to accelerate research efforts to improve diagnosis, optimize treatment, and cure multiple sclerosis.
From their mission statement: “ACP believes that research is the only way to greatly improve the outlook for people with MS. The organization promotes scientific collaboration and accelerates research by rapidly and cost-effectively providing researchers with data and biospecimens they need to explore novel research ideas that can lead to better care for people with MS.”
From CEO and president Sara Loud
It was my privilege to have ACP’s CEO and president Sara Loud join the recent “Intention Party” (February 2, 2021) to launch Intention Tremor. Her peers at the ACP were kind enough to publish an interview with me in their late January 2021 newsletter that you can read here.
At the launch party, Sara said of their focus at the ACP:
“We create centralized resources for researchers in order to make research go faster and better and be less expensive. We have a biospecimen repository; the other thing we have is a people-powered research network called iConquerMS™. This is a network that is run by people living with the disease. Everything we do—the operations, the engagement, the research approvals—goes through people who are affected by MS. It marries our support of the MS community with our focus on research.”
The ACP’s resources have supported 70 research studies globally, generating almost 300 million returned data points for collaborative data mining and disease modeling.
This is what they mean by acceleration: speeding up data collection within a repository significantly speeds up the process of research process and completion. Hence the name, Accelerated Cure Project.
Another reason to support the ACP
The ACP loves to collaborate with writers! How could I resist??? In their recent newsletter, they highlighted two authors with MS who have books that shape the way we persist and work toward living our best lives:
- Freda Spector Warrington’s daughter was diagnosed while a college student. She’s published three books in the Listen to the Light series, with sales that also benefit the ACP.
- Julie Stamm’s children’s book, Some Days We…, guides parents in ways to talk with their children about MS and/or any chronic illness. The protagonist, a young child named Wyatt, navigates the unpredictable obstacles of MS with his mom, Anne.
- A third book series that I’ve contributed to: the Something On Our Minds anthology series, which collects short work (poems, essays, and other prose) that reveal first-person insights and live experience illustrating life with MS (check out Volume 3 and Volume 4, both which support the ACP).
What about MS research during a pandemic
At the “Intention Party,” we also talked a bit about the struggles of medical research in 2020 and 2021. It’s a bit of a quandary right now, not just for MS researchers, but for all non-COVID-19 medical inquiry. Loud explains it best:
“Research has shifted its focus, appropriately enough, over to COVID-19. And so what that means is that a lot of researchers aren’t in the labs right now studying MS because either they can’t be because of the pandemic or because their funding or their efforts have been diverted elsewhere.”
Delays and standstills in MS research labs are due to reassignment of personnel to coronavirus disease and vaccine research. There’s also a huge loss in funding from investors focused on the pandemic. Many in-progress studies may never be completed now due to time disruptions and a large decrease in applicants and participants because of safety concerns.
When the world “reopens” following the pandemic, there will be a lot of catch-up work to do for everyone involved in MS research.
Meanwhile, MS doesn’t care about a pandemic. There are 1 million people living with MS in the US, and 200 new cases are diagnosed every week in the US alone.
This makes me especially glad that my book sales support the ACP; their accelerated support systems will help MS research get back on its feet as soon as possible.
I’m also partial to patient-empowering organizations that listen and respond to the voices and ideas of people actually living with chronic illness, a decidedly 21st-century movement that supports that last-century saying from 1980s’ disability activism, “Nothing about us without us.”