I have no idea if it’s going to work. But I started with…

  • Wanting to go to Rare Disease Week to Advocate
  • Not receiving Art (cheating scandal ta boot!) or Advocate Travel Stipend. 
  • Physically not up for going. Long days starting at 7:30 AM not gonna to happen.
  • There is no AWARENESS being spread. It’s all about Big Pharma and Big Government
  • I have my Meds. I need them BUT that’s only 1 piece of the pie!
  • How do I… How do WE change this?

🙈You’re not allowed to post in groups.

🙉You’re not allowed to post at your doctors office.

🙊 In You’re not allowed to post at your church

(Because if they support you then they have to support everyone so nobody gets any help or awareness)

🐵 you’re not allowed to ask businesses until your full-blown nonprofit because they’re not allowed to give unless you’re a full-grown nonprofit. I’m just trying to get there and spread AWARENESS.

📣 So I’ve switched my MO from my initial/original November initial fundraiser.

I still plan on a portion of the funds going to a future nonprofit. All the (not-allowed’s) have given me a narrow audience. It will take time. 

📣 So I am shooting for AWARENESS. Buy a Shirt. Wear a shirt. And some crowdfunding to pay for alternative therapies… Really just one Rolfing session…this is slow going 🙃

📣 Here’s what I know…

*Men we’re more T-shirts then women. I had my design pre-approved by variety of men

*Children make great billboards. Throw a T-shirt on for baseball practice, soccer, beach cover-up really any day. 

*SHOW SOME SUPPORT. Skip a few Starbucks, in my case I’ll skip a few Komucha’s. 

This needs to be done until everyone can say Acromegaly. And know what it is… At least the gist! 

📣 Calling all Rare Disease, chronically ill, no-one-understands, kind of it people…

  1. 🐵 What if we all work together? What if I were to offer free design work for your own T-shirt. ViveLaFranceNC.com
  2. Possibly logo. 
  3. I’m thinking pull together your friends and family or others affected by your disease… I design your shirts. Wear them! 
  4. If I can sell 40-60 shirts I could do 3 to 4 T-shirts. Or two logos and two T-shirts. 
  5. If it was successful I may need to do a raffle.  

But I feel it’s important that we all help spread awareness because healthy people have never heard of acromegaly. And those who know me still don’t pronounce it right.

#raredisease #acromegaly

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