Welcome to the ACMCRN July Awareness Month page. We are celebrating all through July with something new to offer every week!
To get you started, below you will find some great graphics to share on social media or to use as your Facebook profile image.
You will also find a great video presentation hosted by Lori Verton from our Rare Disease Day, February 2022 that provides excellent look into the life of a rare disease patient.
Be sure you sign up for our newsletter to be the first to be notified when we add new content.
SOCIAL AWARENESS
July Awareness Month is all about getting the word out about Arachnoiditis! To help, we've created a package of social media images to share widely! We urge you to share these custom made images on all your social media channels.
*Be sure to click on the arrow to scroll through the images
Check out our new Social Media Toolkit page that will updated with new graphics throughout the year.
*IMPORTANT DOWNLOAD INSTRUCTIONS: For mobile phones, click and hold the image of your choice and you will get a menu of options. You cannot download them from the large preview option when you click on the image. For laptops, you'll see the image options to like, download, or share the image when you hover your pointer over the image.
WHAT WE DO AT
ACMCRN
ACMCRN was created due to the important need for research and awareness. Our mission is to bring education, research, and advocacy.
Although Arachnoiditis is considered a rare disease, it's more common than originally thought. There's a variety of reasons for this, but a couple of them are patients not reporting adverse reactions from epidural corticosteroid injections (ESI) to the FDA, and negligence by the medical community. We are trying to change this.
Some of our current projects are:
Patient Registry
We are putting together the first ever groundbreaking patient registry. Patients will be able to upload their medical records, including imaging, into a secure registry where the information can be used by researchers.
This is a large project with several working components that will take approximately five years, cost thousands of dollars, and countless volunteer hours to get off the ground.
Patient Survey
We created an online patient survey called StuffThatWorks with over 1000 participants. This survey will help to define and identify attributed causes of Arachnoiditis and gather important information related to Arachnoiditis including; demographics, therapeutics, comorbidities, symptoms, supplements, and medications. We encourage you to participate in this survey.
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RARE DISEASE DAY
YouTube video from Feb of 2022 highlighting the challenges that we all face as rare disease warriors. Our President, and cofounder, Lori Verton hosts this Zoom special video presentation attended by a group of ACMCRN Arachnoiditis patients and caregivers. You will hear riveting stories about the challenges living with a rare disease such as Arachnoiditis in an educational and informative one hour presentation.
FACES OF ARACHNOIDITIS
Every month or so, we add a new patient story that we call Faces of Arachnoiditis. You can read all of the stories on our Faces of Arachnoiditis page.
It's important that we share our stories so that we can spread awareness about Arachnoiditis.
Do you have a story that you would like to send to us to be shared to the public? Please send your story to contact@acmcrn.org. Please try and keep the story under 750 words or less. Be sure to include a photograph of yourself, or we can use a stock image.
DONATE
REGISTER
VOLUNTEER
DONATE
WHERE DOES YOUR DONATION GO?
We are a Canadian non-profit with a global outreach who is 100% volunteer driven. All donations will go to expenditures needed to achieve our mission including:
•Patient Registry
•Global Patient survey
•Practitioner Outreach
•Patient Outreach
•Community Awareness
•Diagnosis Protocol
•Treatment Protocols
•Education Materials for Patients and Physicians
Other expenditures include:
• Website related expenses such as website hosting, email, domain hosting, and upkeep
• Non-profit organization overhead expenses
• E-commerce store for fundraising including platform associated costs
Other projects in the works are a fundraising merchandise store that will feature exclusive merchandise for Arachnoiditis awareness. We plan on launching the store in July, so keep an eye out for the announcement.
Research and Registry Development. This is one of our three primary objectives of our current work. Our first survey through Stuffthatworks is free and is already providing excellent starting information on which to inform our Registry Development efforts. We will be offering presentations of these results throughout July and August, so watch for dates!
VOLUNTEER
We always seek out talent from the Arachnoiditis Volunteer Registry before deciding to pay to contract the work we ourselves cannot do due to our own Arachnoiditis and related healthcare issues. We are always on the lookout for "healthy" volunteers, so if you know of any, have them apply at our Arachnoiditis Volunteer Registry.
We need skills of every kind! Please donate or volunteer to help support our community and our work together! Healthy volunteers needed!
DR. TERRI LEWIS MEMORIAL FUND
We are still accepting Donations to our Dr Terri Lewis PhD Memorial Fund. As most of you know, Dr Lewis was one of our Founding members and our VP Research before she passed unexpectedly. We have earmarked all funds that come through her Memorial Fund towards a yearly award. We are considering such awards as Young Investigator grants or a yearly Scholarship. This decision will be made and announced by year end. We hope you will consider a small donation.
So as you can see, we have a lot going on and a lot to offer the Arachnoiditis community. We thank you for you new and continued support.