Aaron Blocker
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aaronblocker.bsky.social
Aaron Blocker
@aaronblocker.bsky.social
Hypophosphatasia and Crohn’s Disease (IBD) Advocate | Change maker | Data & Analytics Consultant | MSc in Biomedical Research |Spreading awareness & hope, one story at a time
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Hello BlueSky! I’m Aaron. Came over from Twitter.

I live with #CrohnsDisease and an ultra-rare genetic bone disease called #hypophosphatasia.

I have been advocating for these diseases for a long time. I also have a background in #science and love to talk about that! #chronicillness
Tough day for a lot of reasons. So many will be hurt by the legislation that was passed. Especially the chronic illness and rare communities but also those who rely on food assistance.

A sad day in this country.
July 3, 2025 at 11:26 PM
Reposted by Aaron Blocker
As a GI Psychologist I talk w/ patients w/ IBD about stigma. Healing comes from patients learning that they aren't alone. The Crohn's and Colitis Foundation provides many support resources. Take Steps helps fund these amazing programs for patients w/ IBD. Donate below. @crohnscolitisfdn.bsky.social
Help me take steps toward cures for Crohn’s disease & ulcerative colitis
I'm participating in Take Steps, the Crohn's & Colitis Foundation's largest, most impactful fundraising campaign. Funds raised through Take Steps help create a new future for people living with IBD — ...
takesteps.crohnscolitisfoundation.org
May 12, 2025 at 11:55 PM
So much to share from DDW2025 but here’s a couple photos in the meantime.

So many friends and patients making themselves known at the conference is humbling and powerful to see. Then catching up with friends and colleagues!
May 6, 2025 at 11:33 PM
Yesterday was day one of Digestive Disease Week!

I am here in San Diego reporting from the conference as a patient. Excited for day 2 and will post some of my highlights from Day 1. #IBD #GiSky #DDW2025
May 4, 2025 at 2:07 PM
Recovering from my 28th surgery related to my rare disease. Ice cream always helps the recovery. #rare #surgery #raresky
April 20, 2025 at 11:13 PM
It’s absolutely insane that RFK Jr hired David Geier to perform the autism and vaccine study because

-David Geier has no medical degree just a bachelors degree

- He harmfully injected autistic kids with puberty blockers had to pay $10,000

He’s a known anti-vaxxer..
April 19, 2025 at 11:01 PM
Just a reminder: Autism isn’t a disease. There is no “epidemic” of autism.

We are better at recognizing and diagnosing it.

RFK Jr doesn’t have a clue what he’s talking about and his take on autism is disgusting.
April 19, 2025 at 10:03 PM
A sad day for science and healthcare in this country when a known anti-vaccine lawyer is confirmed to the nations top health position. #science #vaccineswork #sciencesky
Breaking News: Robert F. Kennedy Jr., a vaccine skeptic, was confirmed as health secretary. Mitch McConnell, a polio survivor, was the lone Republican opposed. nyti.ms/3EDJeE0
February 13, 2025 at 4:47 PM
I was 20 years old when I had my first two hip replacements.

I was 24 when I had my 3rd and 4th hip replacements.

I was 25 when I was finally diagnosed with an ultra-rare genetic metabolic bone disease called Hypophosphatasia.

#rare #raresky #rarediseasemonth
February 11, 2025 at 1:44 PM
Reposted by Aaron Blocker
This is wildly unacceptable. “Systemic” is a flaggable offense as is “women”. If you study systemic #inflammation in men and #women? Any study on women’s health?🚨✂️ #NSF #savescience
🚨BREAKING. From a program officer at the National Science Foundation, a list of keywords that can cause a grant to be pulled. I will be sharing screenshots of these keywords along with a decision tree. Please share widely. This is a crisis for academic freedom & science.
February 4, 2025 at 2:55 AM
It’s okay to question science—critical thinking is essential. But dismissing the consensus of 99.9% of scientists when you have no background in the field isn’t skepticism; it’s arrogance. #science
January 30, 2025 at 4:14 PM
Reposted by Aaron Blocker
I think some people hear “grants” and think that without them, scientists and government workers just have less stuff to play with at work. But grants fund salaries for students, academics, researchers, and people who work in all areas of public service.

“Pausing” grants means people don’t eat.
White House pauses all federal grants, sparking confusion
The Trump administration has put a hold on all federal financial grants and loans, affecting tens of billions of dollars in payments.
www.washingtonpost.com
January 28, 2025 at 3:03 AM
Last week I was appointed as the Executive Director of the Mississippi Rare Disease Advisory Council.

Extremely humbled and honored to be asked to lead this council where we will work to change the landscape for patients affected by rare diseases in our state. #raresky #raredisease #rare
January 27, 2025 at 6:59 PM
February is rare disease month and February 28th is rare disease day!

For those unaware, I live with an ultra rare genetic metabolic bone disease called Hypophosphatasia.

Where are all my rare disease friends at? #rare #raresky
January 21, 2025 at 7:10 PM
How the world feels right now with all these decisions being made and the disregard for science and the mountains of scientific evidence we have for things like vaccines. #science
January 21, 2025 at 4:03 PM
Thankful for this platform today.
January 20, 2025 at 5:48 PM
Reposted by Aaron Blocker
@aaronblocker.com let's try to make #Raresky big before Rare Disease Day on 28th Feb 👌 #RareDisease
January 15, 2025 at 10:37 PM
Spent the weekend in Chicago working on a really cool advocacy project related to gastrointestinal health. Always cool to talk about my Crohn’s disease story. #gisky #IBD #crohnsdisease
January 14, 2025 at 12:18 AM
Got a good report from my colonoscopy/EGD. Mild gastritis and esophagitis that they biopsied to rule out H. Pylori. Otherwise is Crohn’s related but mild.

Colon/ileum look great! Happy to still be in remission. Will have a pillcam in the coming months to look at my small bowel further #gisky #ibd
January 3, 2025 at 2:13 PM
It’s colonoscopy and EGD time. Hoping for a good report on my Crohn’s Disease
December 31, 2024 at 4:07 PM
It’s colonoscopy prep day! This is my second time using Sutab, the pill prep vs oral solution and I’m a big fan.

The oral prep always made me vomit. So I’m thankful for this option. #IBD #colonoscopy #crohnsdisease
December 30, 2024 at 5:48 PM
Was scheduled for colonoscopy/EGD on Monday but due to some insurance stuff it was either move to sometime in January or move to Tuesday NYE with a GI who isn’t my normal GI, I chose Tuesday since my accumulations are met. Just too much junk we have to deal with. #IBD #crohnsdisease
December 28, 2024 at 6:57 PM
Happy to share that I have been appointed to Mississippis Rare Disease Advisory Council as the rare disease patient! My confirmation by the board is in a couple of weeks.

Excited to get to work and make some change for rare disease patients in Mississippi. #raredisease #rare
December 13, 2024 at 2:02 PM
Going through the diagnostic odyssey/journey with one of my kids and it’s much worse than going through my own diagnostic journey.

My own journey was super hard but having to navigate it with my child is just even harder. #caregiver #parenting
December 12, 2024 at 4:14 PM
It’s Crohn’s and Colitis Awareness Week!

It’s been 15 years since I was diagnosed with Crohn’s Disease which changed my life in more ways than I can count.

Excited to raise awareness this week. #IBD #GISky #Crohnsdisease
December 1, 2024 at 4:58 PM