Day 20 #WEGOhealth #HAWMC

What Has Been the Highlight of Your Health Advocacy Journey?

This is just the beginning so it’s not something profound —Yet. 

But I did hold a 21 day, T-shirt campaign, Acro-What?  I didn’t have a clue what kind of support I would receive. Sadly, the acro–community is not active or interested. It will take time to reach them but I will. I also found great dismay in all who chose to ignore my requests. This is more about personal relationships… I don’t know why but it’s disheartening and it’s ok. I do wonder if it is an oversaturated, crowd-funding mentality or never-heard-of-it, so not caring, mentality? But that’s just it —no one expects a rare disease to touch their lives. They could be so very wrong. 

So, how was this positive.? The people that did! The old friends who said HECK YEAH!! The family members who bought one for everyone. The new friend who shows unbelievable support and positivity plus purchasing and a donation! My mom’s unbelievable friends. One even said to her husband, “What a horrible disease, I never knew! We must buy and wear them!” The Etsy friends (Etsy really was an amazing community only a few years ago) that show their support with a purchase. The last being such an amazing lady, in the last hour saw my missing $26 of my goal and made a donation.… Gets me choked up. Such an unbelievable selfless act.

During the 21 days,  I’ve met some someone with Ehlers-Danlos Syndrome (EDS ) and Paul had a family member pass away from late diagnosis of Amyloidosis. Another rare disease. It only strengthens my convictions to raise awareness, educate and fundraise. I will keep moving forward because that is who I am. 

Praying for a merit award for my painting! I’d like to stand next to my paining and talk to everyone in DC about acromegaly, rare disease and the need for something other then pharmaceuticals. They’re only 21 days left please vote.