Right out the gate: I know I’m writing this days (ok weeks) late. I fully admit that, and while that might not be how these kinds of posts are supposed to go, mine usually go…
Browsing Category Awareness & Advocacy
Rare Disease Day 2024: Raising Awareness, Building Hope
Millions worldwide face the daily challenges of rare diseases, often feeling forgotten and without adequate resources. Tomorrow, on February 29th, 2024, we stand together on Rare Disease Day to raise awareness about these conditions, advocate for better access to…
Behind the Smiles: When Fatherhood Feels Powerless
Something that is rarely talked about, especially by fathers, is how all of this just sucks sometimes. I’m not talking about parenting in general. Nothing like that. But being a parent to a disabled child….
Reflecting on AMC Awareness Day (and Month) 2023
I wrote a post last year, after AMC Awareness Day had passed, reflecting back on it, and comparing it to our first AMC Awareness Day. I actually had full intentions of doing the same this…
AMC Awareness Day 2023!
Yes, I know; I’m a few days late on this post. AMC Awareness Day was June 30th, and today is July 2nd. What can I say? I’ve been busy! Yes, I could have prewritten a…
June 3rd is World Clubfoot Day
Along with Arthrogryposis Awareness, June is also Clubfoot Awareness Month. Every year on June 3rd, individuals, organizations, and healthcare professionals around the globe unite to celebrate World Clubfoot Day. This significant day shines a light…
Why I Gave a Cartoon AFOs — And What It Says About Inclusion
Note: This post was originally drafted for Fatherhood Reloaded, but it quickly became clear that it belonged here Meet Greeney Before Harrison’s birthday this year, I opened up Affinity Designer to create something fun —…
Therapy Thankfulness From the Father’s Perspective
As parents, we always want the best for our children and their well-being is of the utmost importance to us. For the past year and a half, my exposure to Harrison’s therapies, outside of witnessing…
Looking Back on AMC Awareness Day 2022
Our second AMC Awareness Day has come and gone. Another emotional day for us. I’m sure one day I’ll be able to pinpoint it better, to put into elegant words the wave of emotions that…
Welcome to Arthrogryposis Awareness Month! AMC Awareness Day is June 30th!
Welcome to June and Arthrogryposis Multiplex Congenita (AMC) Awareness Month! Arthrogryposis Multiplex Congenita (AMC) is a term used to describe a group of congenital conditions characterized by joint contractures in two or more body areas….
This view….
This might seem like a strange, random photo. It’s not the photo itself but the view it represents why I share. I’m not exaggerating or being dramatic when I say this time last year I…
A First-Year Guide for Arthrogryposis Parents
When our son was born with Arthrogryposis, we were blindsided. No prenatal clues, no preparation, just shock and chaos in the NICU. One year later, I want to share what I’ve learned in hopes it…