April 15, 2015
Description of the Ideas
Living with Pompe Challenge
Pompe patients have difficulty with many "easy" everyday tasks. Each of the following activities, and the "challenges" that accompany them demonstrates a difficulty that a Pompe patient may face every day. In particular, they demonstrate the physical challenges that we face caused by muscle weakness in our arms, legs, core muscles, etc. By completing (or attempting) these activities you now have an idea of what it is to "Live with Pompe." To raise awareness of these difficulties we challenge everyone to do one (or all) of the following activities:
- Make a cup of coffee or tea – while sitting in a chair. No standing!
- Drop something on the floor and pick it up. Without bending over, squatting, or kneeling! Get creative!
- Go to a store, restaurant, or public location of your choice. Avoid all stairs and uneven surfaces (ie curbs, gravel, etc)! Ramps and even surfaces only!
Make a volcano / Blow up Pompe disease
The Challenge: To "Blow Up Pompe" with a home-made volcano:
- We challenge everyone to make a home-made volcano using one of the options from wikihow.com (www.wikihow.com/Make-a-Volcano) or other method of your choosing. The destruction of the volcano symbolizes the effect that Pompe Disease has on patient's muscles.
- We also challenge you to donate to the IPA's International Pompe Day Fundraiser to help fund their short film that will create an explosion of awareness and knowledge about Pompe Disease!
Pause for Pompe
Pompe disease affects approximately 1 in 40,000 people in the world. To raise awareness of Pompe and its rarity, we challenge everyone to "Pause for Pompe". The added significance of the Pause for Pompe is that being "unable" to move symbolizes the effect that Pompe can have on patients.
- Participants are challenged to stay absolutely still for 40 seconds.
- Participants are encouraged to get creative and have fun with their "Pause": Strike a funny pose and/or organize a "freeze mob" with friends and family while holding a "Pause for Pompe" sign.
Take a video of yourself getting up from a sitting position on the floor without help
To demonstrate how Pompe Disease causes muscle weakness even in early diagnosed patients can make something as simple as getting up off the floor hard. (Note: Maybe someone in the general population will realize they have muscle weakness after they find out they have a hard time getting up without help).
- Take a video of yourself getting up from a sitting position on the floor without help (another person, a piece of furniture, etc).
Wear and share the gold / Pompe on you today
Cf. Red Nose Day (Done in England): Do something silly like this: funny nose, funny glasses, funny hat, etc. The "Wear and share the gold / Pompe on you today" challenge:
-
We have all been ill
But some are ill forever
Can you imagine that?
You need to be aware
You need to share
Life is gold,
We all have goals,
Share your gold,
So we can all have goals:
To hope, to love, to live,
Pump up that gold,
Pompe up those goals!
Pompe up that gold!
Make, buy, share a gold pompon
Pompon a gold today
Yes we can, we will pompe-on!
Wear and share the gold, Pompe-on you today!
Easy to make pompons: There are many sites that show you how to make a Pom Poms.