The IPA is excited to announce that the international Pompe community has chosen April 15 as the 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 to show how STRONG our Community is – both in numbers and in passion! There are several ways that you can participate:
- Visit our International Pompe Day blog: https://ipompeday.blogspot.com/
- Participate in the International Pompe Day Activities!
- Become a Supporter! Organizations are invited and encouraged to become Supporters of International Pompe Day by submitting their logo (or name) for publication on the International Pompe Day website. Please email your logo to InternationalPompeDay@worldpompe.org
- Buy Your Official International Pompe Day Merchandise! Merchandise is available at the International Pompe Day Shop on Cafe Press. The Shop is hosted by the Acid Maltase Deficiency Association and proceeds will go towards Pompe Disease Awareness.
"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