alt

The IPA is excited to announce that the first annual International Pompe Day on April 15 2014 was a resounding success!

Patient organizations, individuals, physicians, and industry partners from all over the world participated in recognizing and celebrating our community, and raising awareness of Pompe disease.

The ways in which International Pompe Day was celebrated were as diverse as our patient population, but the underlying theme and message was clear: Together We Are Strong!

The Acid Maltase Deficiency Association (AMDA), the United States Pompe patient organization, is compiling a Commemorative Book of the activities on the first annual International Pompe Day. This book will be available soon - information will be posted on the IPA (www.worldpompe.org) and AMDA (www.amda-pompe.org) websites regarding how to order your copy when it becomes available.

 

In the meantime, here is an overview of some of the activities that occurred:

Poland: The Polish patient organization, in collaboration with their local Genzyme office launched a Pompe Garden to bring awareness to Pompe Disease at the Pediatric Hospital and University in Warsaw. This garden will be a place where each year on International Pompe Day the Community will come together and recognize Pompe Disease. The activity was supported by Medical University of Warsaw, the National Forum for Rare Diseases and the Parliamentary Assembly for the Rare Diseases. There was also an educational meeting prior to the tree planting ceremony where patients had the opportunity to share their stories.

Australia: In Australia the Australian Pompe Association (APA) launched a Thunderclap campaign to bring attention to the situation of Pompe patients in their country. In particular, the fact that treatment is not reimbursed by their government. Messages were sent to the Prime Minister of Health via this platform. In addition, numerous newspaper articles were published drawing attention to Pompe disease and its effects on patients throughout Australia.

Slovenia: Colleagues came together from Serbia and Croatia and worked with the local Muscular Dystrophy Association to host a meeting for physicians. A local expert spoke at the meeting and patients had the opportunity to share their personal experiences.

Malaysia: The Malaysia Patient Organization (MLDA) held a patient meeting.

Russia: The Russian Patient Organization launched their new website in conjunction with International Pompe Day and were able to get an article published in one of the Russian newspapers bringing awareness to Pompe Disease.

Italy: The Associazione Italiana Glicogenosi (AIG), the Italian Pompe Patient Association celebrated the first annual International Pompe Day through a variety of activities:

  • Throughout the day volunteers distributed educational material and held fundraisers in twenty (20) locations around the country. At these sites green bracelets that said "Together We Are Strong" were also distributed.
  • The AIG also held a press conference to debut a film they developed titled, "Together We Are Strong". This video (in Italian with English subtitles) can be seen on YouTube.com at https://youtube.com/watch?v=aqTd8Ciwe3A. It brings attention to the need for early diagnosis - a theme that was emphasized throughout the day.
  • The AIG concluded their recognition of International Pompe Day with a violin concert in the evening that was held in memory of a child who has passed away from Pompe.

Israel: In honor of International Pompe Day, the Israeli Minister of Health (Mrs. Yael German) met with the head of the Pompe Patient Organization in Israel, Samir Salah Eldin and his son, Amer. Amer was diagnosed with Pompe as an infant, and International Pompe Day provided the opportunity for Samir to share his family's story with his country. The meeting between Samir, Amer and Mrs. German was reported on multiple media sources, including the leading Arab website, Panet, and in the leading Israeli daily newspaper Haaretz. In addition, Samir was able to share their story on the website "Doctor's Blog".

United Kingdom: Kezia (15 years old) organized a marathon/fundraiser in honor of International Pompe Day and her sister's 10-year anniversary of being on treatment. Kezia also shared her family's story with a local newspaper to raise awareness of Pompe disease.

United States: The AMDA recognized and celebrated and celebrated International Pompe Day during a fundraiser held in its honor. The fundraiser, teh PCMA of Texas' Pull for Pompe, is a yearly event that raises money for a Pompe-specific research grant. This year's event was attended by over 350 people, and raised over 138,000.00 US Dollars after expenses. The event is the perfect example of how "Together We Are Strong" because it would be impossible to raise this amount for research for a rare disease without the community working together.

Spain: The A.E.E.G. (the Spanish Pompe Patient Organization) celebrated International Pompe Day with the support of the RCE Espanyol football team. The A.E.E.G. was invited to attend a match on April 13, 2014 and prior to the match had the opportunity to raise awareness of Pompe Disease and International Pompe Day by sharing a short video with all attendees at the match. In addition, they had an informational table set up at the stadium. The A.E.E.G. also recognized International Pompe Day by raffling off a deluxe Meditterranean cruise for two.

Mexico: The President of the Mexican Patient Association posted a video to their website recognizing International Pompe Day and raising awareness of the effect of living with Pompe on both patient and their families. This video (in Spanish) can be viewed at: http://iap.pideundeseo.org/buenas-causas/dia-internacional-de-pompe.

Colombia: The Asociación Colombiana de Pacientes con Enfermedades de Depósito Liposomal (ACOPEL) celebrated International Pompe Day through a patient meeting in Cartagena on April 5, 2014 (instead of April 15 to accomedate the fact that the 15th fell during Holy Week, a very important Celebration in Colombia). In Colombia there are 22 known Pompe patients. At the patient meeting in Cartagena the emphasis was on the need for comprehensive care, involving both the patient and the caregiver. At this meeting a physician, physical therapist, an occupational therapist, a dietician and a psychologist were present to discuss the topics involved.

Hong Kong: Terry Lai of Hong Kong provided a link to the following news video that aired on TVB Hong Kong on April 22, 2014: https://www.youtube.com/watch?v=n_CQQwoWFk0. This video (in Cantonese with Chinese subtitles - English subtitles provided by Terry are also available by selecting the English Closed Captioning option on the video) is about Kei Kei, an infantile onset Pompe patient living in Hong Kong.

Japan: Kuniko Nogami of the Japan Patient Association submitted a video for inclusion in the International Pompe Day Commemorative Book, which can be found at: www.youtube.com/watch?v=C-Wa7FdKBG8. This video (in Japanese) shows Yoshida's journey with Pompe. It also includes excerpts from a book created by Yoshido and Kuniko Nogami.

South Africa: Rare Disease South Africa, the patient organization in South Africa that supports Pompe patients, recognized International Pompe Day through a media campaign. They focused on raising social media awareness of Pompe, and they also gave several media interviews.  The purpose of the campaign and the interviews was to raise awareness of primarily the infantile-onset form of Pompe Disease in order to help launch a newborn screening protocol in private hospitals around the country.  As part of this campaign they distributed an infographic on infantile-onset Pompe.

There were also many individual patients who celebrated International Pompe Day. Some did so by sharing their stories on Facebook, others submitted their photos for the International Pompe Day Gallery (http://worldpompe.org/events/international-pompe-day/gallery-uploaded-photos). Other patients and families took the opportunity to raise awareness in their communities.

Industry also raised awareness and celebrated International Pompe Day through both internal and external activities.

Even though the ways in which International Pompe Day was celebrated were different, the result  was the same. Through our various activities the international Pompe Community came together, raised awareness of our disease, and showed the world that "Together We Are Strong!"

Thank you to everyone who participated and we look forward to next year!

 

The IPA board

Kezia (15 years old) organized a marathon/fundraiser in honor of International Pompe Day and her sister’s 10-year anniversary of being on treatment. Kezia also shared her family’s story with a local newspaper to raise awareness of Pompe disease.