This campaign is to raise funds for the development of Chronic.Market, an online marketplace for artists, artisans and other entrepreneurs suffering from the debilitating, currently untreatable chronic illness ME/CFS to sell their work, share their stories, and raise funds for research.
My Journey with Chronic Illness: From Competitive Boxer to Wheelchair User
My name is April Thompson
, and I suffer from Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden, some of whom are too ill to even speak or feed themselves. An estimated 15-30 million people worldwide have ME/CFS. There is no treatment, and no definitively known cause, though study after study has shown the significant abnormalities in the immune, neurological and other symptoms compared to healthy controls.
I developed ME/CFS 13 years ago when I was in peak health and physical conditioning, a multi-sport athlete who had run marathons, boxed competitively, and climbed mountains all over the world. A cold/flu virus lingered and left me so weak I couldn't make it around the block, though just days earlier I'd been able to run miles on end. It has waxed and waned over the years, but I never fully regained my functioning.
ME is a spectrum illness, meaning that there is a broad range of severity. I am blessed to still work a full time job, as most cannot, but still the smallest bout of physical exertion is enough to potentially make me ill for days. At this stage, I often rely on wheelchair assistance to go further than a block, yet my level of functioning is considered quite high compared to the majority of other patients.
With my numerous physical activities taken away, I have turned to a variety of creative hobbies, including visual arts, and connected with numerous artists and artisans around the world who also suffer from ME/CFS. Some are confined to their beds. Most are unable to work regular jobs. Many are consistently denied disability benefits and struggle to provide for themselves and their families. All have a yearning to be productive and share their creations and stories with the world -- a difficult feat when small everyday tasks leave some exhausted and cognitive dysfunction can make interactions impossible.
Chronic.Market: Empowering Artists with ME/CFS
My vision for Chronic.Market is a platform for these artists and artisans to sell their work, share their stories, create awareness for ME/CFS, and raise funds for research and advocacy. I currently have 75+ artists and artisans in 16 countries registered for the platform, 75% of whom are moderately to severely affected
(most being all or partially housebound), and have enlisted Roobykon, a web developer specializing in multi-vendor, multi-currency platforms to design and deploy the site.
I will serve as the site administrator and run the platform on a volunteer basis, but seek to raise the funds to get the platform operational, which will allow me to take a smaller percentage from each artist's sale to cover operating costs, and leave more to donate to ME Action, a patient advocacy organization, Open Medical Foundation, which conducts critical research from private funding on ME/CFS, or other group nominated by participants
. The amount I am looking to raise will cover the cost of the site development and deployment, including purchase of software, one year web hosting, targeted advertising/marketing of the platform's launch, and the 3% fees taking from the Gofundme donation platform.
By making a donation, you are: helping economically empower chronically ill individuals, helping raise awareness for this maligned and misunderstood condition, helping raise funds for critical research, and helping to get the artistic talents and stories of chronically ill artists, musicians, writers, designers and artisans shared worldwide! Every amount, large or small, counts! Please share this campaign far and wide.