Over the last 2 years, it is clear that the COVID-19 pandemic has had wide reaching effects on people all over the world. To better understand the impact of the Covid 19 Pandemic on the worldwide Pompe community, the International Pompe Association and the Erasmus MC are undertaking a one-time international survey of Pompe patients. The purpose of this survey is to look at both the effects of the pandemic on the life-style of Pompe patients, as well as the effects of infections with COVID-19. We believe that it is critical to gather this data so that we can properly and timely document these effects and we would like to ask your help.

To complete the survey would you please contact your local Pompe organisation who will provide you with a link to the survey. To make this as easy as possible, versions of the survey are available in a number of languages.

All Pompe patients over the age of 16 years old are welcome to complete the survey.

All information will be deidentified and the survey has been approved by the Erasmus MC ethics committee. Please see the Erasmus MC Patient Privacy Information https://www.erasmusmc.nl/en/patient-care/privacy

If there is not an IPA affiliate in your country or region, or you need assistance, please email info@worldpompe.org   

Thank you for your help,

  

Tiffany House

Chair, International Pompe Association.

 

For International Pompe Day on April 15, 2022 we asked people in the global Pompe community to contribute a video illustrating how strength and resilience is gained through friendship. All recordings can be watched in the IPD 2022 playlist on the IPA YouTube channel, on the International Pompe Day blog and here:

 

Experiences from Pompe Association in Japan
Four parents of Pompe children, and one individual with Pompe disease, discuss their experiences with diagnosis, treatment and challenges while living with Pompe disease in Japan.

 

Pompe Journeys: Danish family
From Denmark, Anders, Andrea's father, discuses his daughter's journey; from Pompe disease diagnosis as an infant, through to teenage life, highlighting the importance of close family support.

 

Father and Son discuss PompAbility
Allan Muir talks with his son about the series of short films they created together. The PompAbilty film series can be viewed from the Pompe Support Network website and also on the Pompe Support Network YouTube channel.

 

IPD 2022 AMDA
Three of members of the AMDA (Acid Maltase Deficiency Association) (Marsha Zimmerman, Morgan Burroughs, and Tiffany House [President]) introduce themselves and talk a little about what they do for the AMDA and how it helps the Pompe community.
Website: https://amda-pompe.org, email: info@amda-pompe.org

 

Tiffany in conversation with her sister and family
A short conversation with my sister and her family about the strength I get from them. Be warned—we have little kids so it’s a little chaotic! :-)
Tiffany from Texas

 

New Zealand Pompe Network
In NZ we have formed great friendships among our Pompe families. With those connections we are able to support and understand each other even better. It is much easier to be stronger when you have people to support you.

 

Happy International Pompe Day from the Italian Pompe Community
A short conversation in Italian about what strength and resilience mean to us.

 

Pim Pijnappel in conversation with Tiffany House
Tiffany House, AMDA President, discusses international cooperation with Dr. Pim Pijnappel, Associate Professor at the Erasmus Medical Centre, Rotterdam.

 

Pompe Voices from France
This is a very moving conversation between Olivier and his close friend. The conversation concentrates on what’s happening in the body and Pompe medication, and the difficulty of finding support. But Oliviers's friend is probably the person who best understands the impact of his condition, both in body and mind.

 

Nina Raben in conversation with Tiffany House
Dr Nina Raben, who works at the National Institutes of Health (NIH), talks of her 30 year of dedication to understanding the science behind Pompe disease and its treatments. Her excitement and motivation comes from meeting and listening to patients who she regards as a very well informed community. Nina also talks of her support for the Ukrainian Pompe community and is impressed by the way the International Pompe community is supporting them.

 

Priya Kishnani talks with Tiffany House
Prof. Priya Kishnani is well known to many people within the international Pompe community. Priya is Professor in the Department of Molecular Genetics and Microbiology at Duke University School of Medicine. She talks of the privilege of working with such a strong and friendly patient community, and feels it is a very special relationship that provides motivation to future generations of physicians and scientists.

 

Ryan and friends say HI Pompe Day
Ryan, Steven, Alison and Nealie say "Happy International Pompe Day!"

Author: Maryze Schoneveld van der Linde, Volunteer, Communications Coordinator, International Pompe Association

Date: March 19, 2022

 

On February 24, 2022, at 5 am in the very early morning, I woke up to a WhatsApp message that vibrated. One of the mothers of a Pompe child messaged: ‘We woke up to explosions and the sound of planes’. 

I think it was one of the most unrealistic messages I ever received.

Despite their fear, and totally unknown, the family who ‘woke me up’ packed to go to hospital as their little girl should receive her infusion that day. While they were driving I received another message: ‘Maryze, we are driving towards Kyiv, but there are many many cars leaving Kyiv’. The dedication to get treatment for their daughter is so strong that the family continued driving to the hospital. That day the hospital advised them not to return home, but to stay in hospital. Mother and daughter had to stay the night in the hospital shelter.

From the moment I woke up at 5 early that morning, I contacted the other Pompe families in Ukraine. I mapped out where they were located: Lutsk, Kyiv, Cherkazy, Dnipro, Odessa. The following days we had much communication; we informed each other; reassured each other and I learned what people wanted. 

Four families decided to leave Ukraine, to ensure their children could continue their treatments, and to make sure they are safe. Destination addresses were given to me. I was happy to know where they were going. Two families decided to stay for various reasons. They reassured me they had enough supply of ERT and could get the treatment closer to home, so they didn’t need to travel for long.

Some mothers went alone with their children in the back of the car; driving to Italy and Poland. The family of the little girl had no family abroad and I invited them to come to the Netherlands. They could stay with my family, and meanwhile I would look for housing.

While everyone was driving through a country in war, I informed the Sanofi team about which patients were leaving, and to where they were travelling. Sanofi could then prepare everything to make sure the patients would get their treatments in time. The hospitals in Poland, Italy and the Netherlands were notified and prepared to receive their new patients.

I contacted the physicians in the Netherlands and we exchanged all necessary information. The Dutch Pompe specialist was contacted by the Ukrainian physician in Kyiv so that medical information could be shared. My physician asked people in her neighbourhood if they had a place to stay for this family. I live two hours drive from Rotterdam, so it would be best if the family finally could get housing in Rotterdam. I was so happy when I heard a family volunteered to provide housing not far from the hospital.

On Thursday March 3, the family with the baby girl crossed the border with Poland. They let me know by sending a picture of them passing it. I had tears in my eyes. They were safe.                  

Another mother with 3 children already arrived safe in Bulgaria and was on her way to Italy where her husband is employed.

On Saturday the 5th of March, a car with Ukrainian number plate entered my street. The fully packed car was dirty, but the people inside beautiful. We all shed tears. Finally they arrived!

While they stayed in my village, people heard about this family and donated money for them. It was clear that money was needed. A week before the father of the family had a job and suddenly had no income anymore. It was also clear that the whole situation had a high impact on them: a sick child, leaving their beloved country to to save their child, leaving their parents, brother and sister. I can’t even imagine it, if it was to happen to me.

The family left for Rotterdam as their child would receive her treatment there, on March 9th. The physician was well prepared thanks to the information from the Ukrainian physician in Kyiv.

On Thursday, March 17th, the two children of the Odessa family received their first infusion in Florence, Italy. Again wonderful news.

Next week the children of the Ukrainian families who went to Poland will get their first treatment in Warsaw,  Poland.

It’s wonderful that all countries, Sanofi employees, patient organisations, doctors and individuals are so cooperative and supportive. It shows that when we work together, caregivers and patients, patient associations, doctors and industry, we can make a difference because ‘Together We Are Strong’!