Category: event

ACR JIA Resources Walkthrough on Facebook Live Feb 8 @ 8 pm

Posted on by Grayson

As many of you know, I recently had the honor of working with the American College of Rheumatology and pediatric rheumatologists. Our team developed a series of parent and family-focused handouts covering a range of topics, from practical tips for managing daily activities to emotional support strategies and more. You can view those handouts here.

On Thursday, February 8, at 8 pm Eastern Time, I’ll be hosting a Facebook Live walkthrough of these resources. If you’d like to join, please RSVP on the Facebook Event page or visit the Not Standing Still’s Disease Facebook Page as the event starts.

Autoimmune Community Institute to Host Inaugural Autoimmune Health Equity Summit [postponed]

Posted on by Grayson

Update:

With deep sadness, the Autoimmune Community Institute announces today that we must postpone the Inaugural Autoimmune Health Equity Summit originally planned for Saturday, March 12 due to technical issues. 

While compiling our pre-recorded interviews to create the final product, we noticed that the video from some of our amazing speakers did not record. This error is not one that could have been foreseen or prevented, as this is the first time an error like this has occurred. As a result, we felt it necessary to postpone the event to rectify these issues and ensure our speakers can be seen and heard properly.

Dr. April Moreno, Founder at Autoimmune Community Institute has provided the following statement:

“Unfortunately, we experienced technical difficulties with the video service platform and will need time to correct some of the recordings for the event.”

Despite these unfortunate setbacks, registration will continue to be open for the postponed event, which will now occur on March 19, 2022, at 12pm Pacific Time (3pm Eastern Time. We continue to look forward to hosting the event and apologize again for any inconvenience or disappointment. 

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The following is a press release dated March 7 from the Autoimmune Community Institute.

The Autoimmune Community Institute is dedicated to autoimmune health equity through community-based research and support services. The all-volunteer team strives to fulfill that mission by creating spaces for diverse autoimmune voices and experiences in community-centered research design, community support, and health equity advocacy every single day.

Today, ACI is taking a momentous step to further its mission and fulfill its goals by announcing the Inaugural Autoimmune Health Equity Summit. The ACI Health Equity Summit is our signature event to highlight the importance of diversity and representation in autoimmune communities.

This free event will discuss the importance of diversity and representation in research, policy, advocacy, and community support services; as well as the difference between equality and health equity and why we must work toward equity in all policies. Participants will also be introduced to some of our excellent partners in autoimmune health serving diverse communities.

The summit is designed for autoimmune patients, clinicians, researchers, and anyone who works with or has an interest in autoimmune topics. It will be held on March 12, 2022, at 12 pm Pacific Time (3 pm Eastern Time). Registration for the event is now open here! 

Please share this event widely within your networks. The staff at ACI is extremely excited to be hosting this event, and cannot wait to see you there!

autoimmune community institute logo

IG Live Wed. 1/19 on Trans, Non-Binary & Gender Non-Conforming Health, Advocacy & Allyship

Posted on by Grayson

You’re invited to a HealtheVoices Instagram Live on Trans, Non-Binary & Gender Non-Conforming Health, Advocacy & Allyship this Wednesday, January 19 at 4 p.m. ET/ 1 p.m. PT!

Tune in for a vial conversation with host Mychelle Williams, LPC, NCC (she/they) and expert activists La’Mia Aiken-Medina (she/her), Gia Love (she/her), and Julian Gavino (he/him) on the experiences and challenges transgender, nonbinary and gender non-conforming individuals face in pursuit of health and wellness, including: medical bias and discrimination; accessing quality and comprehensive healthcare; and mental health and wellbeing. The discussion will also cover key tenants of advocacy and allyship in support of these communities.

This HealtheVoices Chat is presented by the DEAI Task Force. Learn more here.

Tap this post to receive a reminder when the event starts. You can also add this to your Google Calendar by clicking here.

Help Tell the World: #PatientsHavePower

Posted on by Grayson
I am proud to announce that we are official participants in the Patients Have Power campaign run by Clara Health (who runs the Breakthrough Crew!).
This campaign is a Boston based initiative aligning the world’s epicenter of healthcare around one message: Patients Have Power. The movement is comprised of patients, caregivers, allies, nurses, doctors, researchers, members of the healthcare workforce and anyone and everyone who believes in patient power all around the world.
I believe patients should be empowered with the knowledge and resources they need to hold the ultimate power in their healthcare journey and are proud to say that we live the mantra: Patients Have Power.
Interested in getting involved? Show your support by participating in the following:
Declare your support: Join our #PatientsHavePower campaign on Twitter. Click to tweet.
Join the Thunder: Add your voice on Thunderclap to help the message spread! Register here.
Twitter Chat: Join the #PatientsHavePower chat on Thursday, September 7 at 3:00 PM EST.
Patients Have Power Signs: On Thursday, September 7 take a picture of yourself holding up a Patients Have Power sign and share on social media.
Nice cream social & card making: Swing by Mother Juice Kendall Square on Thursday, September 7 between 12:00 and 5:00 PM for vegan ice cream and card making for hospital patients. RSVP here.

 

World Arthritis Day

Posted on by Grayson
Today is World Arthritis Day.
It’s a day to raise awareness of how shitty types of arthritis are and what they can do.
Since 2007, I’ve gained 100 pounds due to my diseases, the treatments, the fatigue, and fun GI issues. I have gone from someone able to run miles at a time to someone whose knee attempts murder when going up the stairs. I’ve lost hair, gotten horrible life-threatening infections, had my liver freak out, and had to leave my day job. I had to completely change my life from dropping out of grad school a few years ago to eliminate stressful & harmful people from my life to changing what I eat to changing jobs.
Arthritis even took my best friend from me, literally making it so that her body couldn’t fight sepsis.
My relationship with Arthur is a love-hate one, though.
It’s given me a direction for my passion of helping others. It’s allowed me to go on trips and participate in amazing things I wouldn’t have without it. I’ve seen the best and worst of humanity in how we as a society address those with disabilities, infantilizing or demonizing them instead of helping them. It’s pushed me to become better, to participate in bigger things, to try to change the world for the better.
Most of all, it’s given me the most amazing friends and compadres I could ever ask for all around the globe.

 

Join Me For #Rheumchat Next Week

Posted on by Grayson
Exciting news!
I’m co-hosting #Rheumchat next week with the American College of Rheumatology‘s Simple Tasks division.
If you pop over to the #Rheumchat site, you can read all the questions we’ll be discussing. You can also join the event’s Facebook page which will kindly remind you of the chat here.
What: #Rheumchat: Becoming an empowered patient
When: Thursday, August 18 at 1 pm Eastern (NYC) Time
How: Follow the tag #Rheumchat on Twitter (or click here) and make sure to use the tag #Rheumchat in any tweets you put out into the Twitterverse so others can see your thoughts!

 

Meeting Emily of Chronic Curve!

Posted on by Grayson

If you follow me, you’ve no doubt heard of Chronic Curve. She’s amazing.

She also just happens to live a few hours from Orlando, meaning T and I made the gorgeous drive out to visit her while we were down there for the JA conference. We didn’t get to spend as much time as I wish we could’ve because of the drive, but it was well worth it.
Em and I are so similar. It’s insane. Well, except that she’s met Snoop Dogg and I have not.

Insert sad face here.

The amazing thing about Em and I, though, was that, while we had vaguely heard of each other in passing before, it really took Laura’s death to bring up close together. I have no doubt that we would’ve figured out how awesome we both are sooner or later, but the fact that our friendship was cemented in such grief and sadness I think makes it that much cooler. The three of us honestly are all similar and I wish that Laura had been able to physically be there with me and Em.

I also got the distinguished honor of being the first person that Bruce the Boxer has immediately warmed up to. I think I smelled like his slobber for like two days, but I wouldn’t have changed it a bit!

Me and mah new BFF

It was so fun to meet Em and drown in Bruce slobber. The latter was definitely therapy, but so was the former. Meeting someone you admire and care about is pretty cool, but it’s elevated to new heights when it helps fill a void from a loss.

 

World Autoimmune Arthritis Day is coming up!

Posted on by Grayson

While historically World Autoimmune Arthritis Day has run as an online convention, this year the event is really revving things up and hosting it in the form of a global race around social media and the internet! Not only will a Global Race Map send you to find helpful resources, but you will be invited to participate in live webinar chats (or “Detours”) and awareness activities (“Crowd Rallies”) sure to put our diseases on the map!

You don’t have to register to play, BUT you should. Part of registering means you can choose foundations to donate money to like the Arthritis National Research Foundation and/or Creaky Joints.

Another reason you should register? You can pick teams! Team Not Standing Still’s Disease definitely would love to have you race with me and all our sick peeps! It’s free and SUPER easy, just go to the website to learn more and register.

When you see “Why Play WAAD15 Alone? Play with Others!” on the registration page just type Not Standing Still’s Disease in the box. Then “like” and “follow” the WAAD social media pages for updates on all the cool, live things to do during the event.

It starts on the WAAD Facebook and Twitter pages at 12pm ET/USA on May 15th and runs continuously for 6 days.

See you in the pit!

WAAD Live Chat TONIGHT at 8pm CT

Posted on by Grayson

Hey gang!

Sorry I’ve been a little MIA lately. I’ve got a lot going on (that I’ll go into more later, I promise!!).

I just wanted to drop a line and say that TONIGHT I’m doing a live chat/hangout for World Autoimmune Arthritis Day. It’s $7 to get access, but there are a ton of resources there from booths (think companies like Creaky Joints, the Arthritis Foundation, AARDA, Wego Health and others around the world) to pamphlet-type deals to blog posts and more! There are a ton of live chats coming up in the next 40-something hours, and while I may be biased (since a lot of them are friends and awesome people) I think it’s a great source of information.

My chat tonight is from 8-9pm CT. I’ll be answering questions about everything, from sex to growing up with JA to advocacy and more, in the Meet & Greet Booth in Exhibition Hall 3.

Please check out this schedule for more people, but definitely make sure to check out the chats from Rochelle Lentini, Julie Cerrone, and Dawn Gibson just to name a few.

Hope to see you tonight!