International Pompe Association

International Pompe Day - Archive

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The IPA would like to thank everyone who participated in the Second Annual International Pompe Day Art Contest!

All of the submissions were wonderful, and captured the strength and diversity and perseverance of our community. Together we truly are strong!

The IPA is very excited to announce the winners in each category:

Age 0-5

Jelle Roskam (First place)


My aunt drives a wheelchair with interesting lights on her joy-stick. Sometimes I can sit on her lap and drive along. Together in a wheelchair is fun!

Read more: 2015 International Pompe Day Art Contest: Results

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For Immediate Release:
April 15, 2015

In honor of the Second Annual International Pompe Day, the International Pompe Association (IPA) is excited to announce that ”Pause for Pompe” has been chosen by the international Pompe community to be the International Pompe Day Fundraiser!

Goal of International Pompe Day Fundraiser
The goal of the International Pompe Day fundraiser is to raise $50,000 (USD) to develop and produce a short film to raise awareness of Pompe disease. In particular, the need for access to therapy and the importance of early diagnosis will be emphasized. Studies have shown that early diagnosis and access to treatment results in the best long-term results for Pompe patients, and we believe that our short film will help future Pompe patients be diagnosed sooner by raising awareness of Pompe disease.

What is the Pause for Pompe?
The “Pause for Pompe” challenges people to “Pause” (stay completely still) for 40 seconds. This 40-second Pause challenges participants to see what the most severely affected Pompe patients experience–the inability to move. It also represents the 1 in 40,000 people in the world that are affected by Pompe disease. So Pause for Pompe and donate to the IPA’s International Pompe Day Fundraiser so that future Pompe patients will no longer be forced to Pause!

How do I participate?
It’s easy to participate in the Pause for Pompe! All you have to do is stay completely still for 40 seconds! The IPA encourages everyone to get creative and have fun with their Pause for Pompe!

Some suggestions include:

  • Strike a funny pose during your Pause!
  • Organize a “freeze mob” with your friends and family!
  • Pause with your friends and family!
  • Make a short video of your Pause!

On the IPA’s International Pompe Day website, there are several signs that you can print out and hold during your Pause. Or make one of your own!

To show your support of the Pause for Pompe we encourage you to post a photo or video of your Pause for Pompe on the International Pompe Day Facebook page (https://www.facebook.com/InternationalPompeDay) or on the International Pompe Day website (Photo Upload Form: http://worldpompe.org/index.php/international-pompe-day/photo-upload-form)!

Read more: International Pompe Day Fundraiser Launched!

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April 15, 2015

Thank you for your support! All proceeds from this fundraiser will go towards creating and developing a short film to raise awareness of Pompe disease.

There are two ways that you can make your donation to the International Pompe Day Fundraiser:

1) You can make a donation via Paypal

  • To donate through Paypal:
    • Euro:
      PayPal – The safer, easier way to pay online.
    • USD:
      PayPal – The safer, easier way to pay online.
  • You do NOT have to have a Paypal account to donate!
  • In the “Message About Your Donation” section of the Paypal page, please include how you would like your donation to be acknoweldged (i.e. your name, annonymous, etc).

2) You can make a donation through wire transfer

To donate through a wire transfer, please use the following banking details:

Read more: How to donate to the 2015 International Pompe Day Fundraiser

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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:

  1. Make a cup of coffee or tea - while sitting in a chair. No standing!
  2. Drop something on the floor and pick it up. Without bending over, squatting, or kneeling! Get creative!
  3. 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:

  1. 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.
  2. 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.

  1. Participants are challenged to stay absolutely still for 40 seconds.
  2. 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.

 

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On our first annual International Pompe Day, the IPA would like to thank everyone who participated in the first annual International Pompe Day Art Contest!

All of the submissions were wonderful, and captured the strength and diversity and perseverance of our community. Together we truly are strong!

The IPA is very excited to announce the winners in each category:

Age 0-4

Juan du Plessis (First place)

art 1396274865 Juan du Plessis 1
Juan's class made this for him.
His hands are the ears.
They all wrote their names next to their hands.
Together We Are Strong... Like a Lion!

 

Townes Craft (Second place)

  art 1396117806 Townes Craft

 

Age 11-18

Morgan Burroughs (First place)

Morgan Burroughs 

 
Age over 18

Karen Kacures (First place)

art 1393991915 Karen Kacures 1

 

Rebecca Brooks (Second place)

art P1100922 Rebecca Brooks

 

Erin Gosselin (Third place)

art 1396321906 Erin Gosselin page 1

Click on the image to download the complete essay as a PDF file.

 


The IPA is also pleased to announce that we are able to provide prizes to the winners thanks to the support of our industry partners! The prizes are as follows:

First place=$200
Second place=$100
Third place=$50

Thank you again to everyone for their submission!

The IPA Board