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The IPA is excited to announce that the international Pompe community has chosen April 15, 2014 as the first annual International Pompe Day!

The goal of International Pompe Day is to foster international awareness of Pompe Disease and the slogan for our day is "Together We Are Strong". The IPA encourages everyone to become involved in our inaugural International Pompe Day to show how STRONG our Community is – both in numbers and in passion!

There are several ways that you can participate!

Read more...

 

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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

 

"Translational aspects are key elements of the rare disease field, and Pompe disease plays a major role model for the entire rare disease community. Linking international resources, researchers, clinicians, public money and industry together will provide superior treatment to all of our patients with harmonized standards of care around the world. I strongly support any networking that includes the national and international Pompe patient organizations. As we made great steps forward during the past decade, let´s celebrate the first annual International Pompe Day on April 15, 2014!"

Professor Benedikt Schoser
Friedrich-Baur Institute, Department of Neurology, Munich, Germany


"For the past twenty five years, I have studied the biochemistry, molecular genetics, and cell biology of Pompe disease. My work days are similar to those of most scientists - long hours, intellectual and experimental challenges that are both addictive and frustrating, tedious manuscript preparation, and worries concerning research funding. So what, you might ask, keeps me coming back to my laboratory each day? Hackneyed as it may sound, I have to disclose that it is the infusion of incentive to find better treatments for Pompe disease that I experience following my attendance at meetings that include patient presentations. No scientific talk or high of discovery so deeply inspires and motivates."

Dr. Nina Raben
Staff Scientist, Laboratory of Muscle Stem Cells and Gene Regulation, NIAMS, National Institutes of Health, Bethesda, MD, 20892, USA


"Duke has a long and dedicated history to Pompe research. To make great strides in the field and improve the lives of our patients, we need to build awareness and create partnerships among the researchers, patient organizations and industry. We are very excited to support and be a part of the first annual international Pompe day as we celebrate Together We Are Strong!"

Priya S. Kishnani, MD, MB BS
Duke University Medical Center, Durham, NC 27710, USA


"Together we are strong! - A better slogan for the first International Pompe Day could not have been chosen. Activities around Pompe disease either driven by patients, clinicians, scientists or industrial parties have always been focused on a common goal: understanding and combatting the disease in order to improve the life of patients. Patients are pressing doctors to diagnose and cure their disease, doctors put the pressure on scientists to come with brilliant solutions, and finally the pressure is laid on industrial parties to proof they can realize the 'unmet needs'. The magic with Pompe disease is that each party stands for its own case, collaborates but also quarrels with other parties, but at the end all parties adhere to the same common goal and achieve that goal. Together we are strong!- a very true message, worthwhile to be spread at this first International Pompe Day.

Arnold JJ Reuser
Department of Clinical Genetics, Center for Lysosomal and Metabolic Diseases, Erasmus MC University Medical Center, Rotterdam, The Netherlands


 

 
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Acid Maltase Deficiency Association (USA)
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The Association for Glycogen Storage Disease UK
The Association for Glycogen Storage Disease UK

Australian Pompe's Association
Australian Pompe's Association

Lysosomal Diseases New Zealand
Lysosomal Diseases New Zealand

Canadian Association of Pompe - Association Canadienne de Pompe
Canadian Association of Pompe
Association Canadienne de Pompe

Selbsthilfegruppe Glykogenose Deutschland (Germany)
Selbsthilfegruppe Glykogenose Deutschland (Germany)

Vereniging Spierziekten Nederland (The Netherlands)
Vereniging Spierziekten Nederland (The Netherlands)

National Organization for Rare Disorders (NORD)
National Organization for Rare Disorders (NORD)

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Hrvatski savez za rijetke bolesti (Croatia)

Association Shifa des Maladies NeuroMusculaires (Algeria)
Association Shifa des Maladies NeuroMusculaires (Algeria)

Genzyme Corporation, a Sanofi company (USA)
Genzyme Corporation, a Sanofi company (USA)

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