2022: International Pompe Voices

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.

• Experiences from Pompe Association in Japan - Watch on Youtube
  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 - Watch on Youtube
  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 - Watch on YouTube
  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 - Watch on YouTube
  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 - Watch on YouTube
  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 - Watch on YouTube
  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 - Watch on YouTube
  A short conversation in Italian about what strength and resilience mean to us. 

• Pim Pijnappel in conversation with Tiffany House - Watch on YouTube
  Tiffany House, AMDA President, discusses international cooperation with Dr. Pim Pijnappel, Associate Professor at the Erasmus Medical Centre, Rotterdam.
  
  
• Pompe Voices from France - Watch on YouTube
  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 - Watch on YouTube
  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 - Watch on YouTube
  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 - Watch on YouTube
  Ryan, Steven, Alison and Nealie say "Happy International Pompe Day!"
  

Samuele grillo parlante

Ciao,
sono Samuele.
ho 11 anni e vivo a Trepuzzi, provincia di Lecce, Italia.
Lo studio mi impegna molto, ma trovo sempre il tempo per le mie passioni (musica, libri, teatro).
Qui partecipo ad un saggio della scuola di teatro, che frequentavo prima del Covid, ed interpreto il "Grillo Parlante" del "Pinocchio" di Collodi. Sempre avanti, non mi abbatto.
TOGETHER WE ARE STRONG. 💕

We can reach so far as our mind goes!

CHRISTOS SAMARAS

AGE 52

GREECE

"We should get stronger every day of our life to battle for our breath and stepping. This is our life, it is not an easy one, but it is beautiful and we must keep moving forward"

Jack Enzler

At Rancho Mirage, California

I was diagnosed with LOPD 6 years ago at age 62...I was hired by The Home Depot almost 3 years ago, (I now work at the Rancho Mirage, California location) and, at the time, did not share any details of my condition (passing off as the slow moving old guy!)...in recent months I've shared more of my situation as the disease progresses..I feel fortunate to be working for a company that cares about its people and the community at large..a recent example is last month I was faced with a move that was overwhelming (just from a physical/ logistical sense. My supervisor asked if I'ld be receptive to help and I quickly responded, "yes please!"...on the big day they moved all the heavy furniture and many heavy boxes which reduced the stress greatly. 

As a former contractor I get a lot of satisfaction helping people with their various projects and, while I'm shuffling around these aisles even more slowly now..and heavily dependent on my "go-back" (returned merchandise) shopping cart (aka walker), I hope to continue as long as I can.
God bless everyone reading this and those you love❤️. 

Jack Enzler

Haley-IOPD

Haley Hayes is from Virginia, USA. She's 15 years old and was diagnosed with Infantile Onset Pompe Disease at 6 months old. She loves connecting with Pompe family all over the world via social media. She is also passionate about spreading awareness and newborn screening.

Pompe Life in Texas!

Howdy! In Texas, Pompe Life for me is all about family and friends. We love fiesta, the outdoors, and the Pull for Pompe!  Several of these photos are from past Pull for Pompe events, a fundraiser for Pompe research. It is generally held in April, right by International Pompe Day! I also include a photo from the "Pause for Pompe" we did on International Pompe Day in front of the Alamo several years ago! Another fun day of support and awareness for Pompe! Hope to see ya'll here in a few years at the next AMDA/IPA International Pompe Patient and Scientific Conference!

Tiffany House, Texas, USA (38)

Don't lose hope (you never know what tomorrow will bring)

Happy International Pompe Day from the Acropolis of Athens (Greece). The Acropolis of Athens and its monuments are universal symbols of the classical spirit and civilization and form the greatest architectural and artistic complex bequeathed by Greek Antiquity to the world.

My name is Penny, I am 51 years old and I have been diagnosed since 2002 because of my brother who also has Pompe.

I want to say that I am so grateful being a part of Pompe community all over the world. I found a new family who supports me and shares with me the latest insights into Pompe diagnostics and treatments.

Thank you all Pompe warriors for your stories and experiences, your feedback, your answers and guidance, your love and compassion, your emotional support and inspiration that helped me be a survivor for about 20 challenging years without any treatment.