Arachnoiditis is a preventable spinal cord injury caused by the neurotoxins in spinal injections and invasive spinal procedures. Prevention is the ONLY cure.
In 2014, inspired by The Culture of Possibility: Art, Artists & the Future by Arlene Goldbard; I created the Art For Arachnoiditis Project to increase awareness and promote prevention while giving myself and other survivors the valuable connections, support, and creative opportunities we need.
ART FOR ARACHNOIDITIS SURVIVORS
Started as one-to-one Survivor Portrait Project in the Western NY Wilds of Allegany County, NY; the Art For Arachnoiditis project eventually became an international Creative Wellness Project serving survivors in 93 countries (WordPress Report 2015). Fiscally sponsored by the New York Foundation for the Arts, the project was most active from 2014 to 2018.
ART FOR ARACHNOIDITIS AWARENESS
At no cost to them, Arachnoiditis survivors from around the world were able to submit art entries for an annual exhibit to increase arachnoiditis awareness. Though we no longer have the resources to continue that aspect of the project, there is a great deal of free content and coping tools that will remain available to anyone who would like to use them. You can find headings for those topics when you scroll down to the bottom of the home page of the website I created for arachnoiditis survivors and their care providers.

Via email, survivors are still invited to submit digital images of any artwork they have created which helps them cope with arachnoiditis. (Subject: Add my Art to A4A gallery.) As my schedule permits, these images are added to this online gallery of art by arachnoiditis survivors.

Though it has been impractical for me to pursue additional legislative efforts in recent years, working with Senator Catherine Young during the project resulted in the NY Senate Resolution No. 5436 and No.3551 proclaiming July (2018 & 2016) to be Arachnoiditis Awareness month.

At the time of my injury, arachnoiditis was unknown to the medical professionals and community attempting to assist with pain management, rehabilitation, and helping me to adapt to this new way of life.

Some of the survivors included in the art for arachnoiditis project, Lori Verton, Dr Terri Lewis PhD, and well known community elder, Louise Carbonneau Vermeiren, created ACMCRN, a Collaborative Research Network in 2017 in order to bring light to this rare disease and a voice to those who suffer with it. ACMCRN leads the collaborative effort in bringing patients, caregivers, doctors and researchers together to work as one team in furthering research and education goals of the Arachnoiditis community. Their goal is “to employ the latest in Rare Disease data sharing/ research tools and the power of online community engagement to advance our understanding and treatments for Arachnoiditis & Chronic Meningitis.”

They have posted some ways to help participate in Arachnoiditis Awareness Month.

More About the Art
Shown in the above July awareness poster, “Honesty and Hope (a.k.a. No Pain, No Gain)” is a copyright protected 36″ x 36″ acrylic on stretched canvas, painting included in the digital display on jumbotrons in NYC during Art Takes Times Square via Artist Wanted/See|me.
It is licensed for Gallery use at Pain Exhibit.org
Featured in American News Report National Pain Report.September 2013
It is also featured as the Cover (with Essay p. 194) in Volume 28, Number 3, 2014 of The Journal of Pain & Palliative Care
This last piece in the Facing Phases Series (2009-2012) is dedicated to fellow adhesive arachnoiditis patients and the support networks that keep them going.
The project provided an affordable venue for Survivors to tell our story through Independent Publishing Services, display original healing art by Arachnoiditis Survivors, encourage healing through assorted Healing Art Activities, and creative practices used in ancient and modern art therapy applications, provide methods for arachnoiditis survivors to document survival and adaptation through the arts, establish a venue to publicize arachnoiditis awareness/prevention events using original art by Arachnoiditis Survivors, and (to the best of my ability) supply credible links to resources for survivors.
The Art For Arachnoiditis Project continues to provide international Creative Wellness Services to arachnoiditis survivors, their families, and care providers.
Find important embedded links and updates about the project in the July Arachnoiditis Awareness post on Patreon here: https://www.patreon.com/posts/arachnoiditis-85416929 HnHprSlkJULYpost7.10.17