International Pompe Association

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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:

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The IPA would like to thank everyone who participated in the Talent of Pompe (ToP) Awards Contest on the occasion of the Fourth Annual International Pompe Day!

The IPA is very excited to announce the winners in each category:

Age 0-5

First Place: Abdurrahman Amerat


Many people find it hard to breathe and if we save our trees we can then make it easier for people to breathe everywhere in the world!

Second Place: Tom Fauvel


Chaque jour Tom contribue a faire connaitre la maladie de pompe en expliquant son quotidien sur les reseaux sociaux.
Translation: Every day Tom helps to make known the disease of Pompe by explaining his daily life on the social networks.

 

Age 6-10

First Place (Tie): Samuele Giorgio Marsano


Samuele is a 7 year old rocker from Italy! He loves playing electric guitar and drums, which he started to learn how to play only one year ago. Samuele has Pompe Disease. Samuele loves music, because through music he is able to express his strength. "Music makes me stronger," he said. Samuele takes weekly music lessons because he hopes one day to play in a rock band and perform on a big stage.

First Place (Tie): Abdullah Amerat


My piece shows many examples of the benefits of BEING together, not just with having muscle WEAKNESS, but benefits of being together in general. First of all, in the bottom, slightly to the middle you can see an ant on a wheelchair that is picking up a stick, and together with some help, she can pick up the large stick and help her fellow ants build their nest. Also in the bottom left you can see an ant struggling to lift up a stick, this shows that people even without muscle weakness may need some help sometimes as well. The bottom half as a whole (The part which has ants in it)shows loads of ants working together to make their nest. An ant cannot make its nest by itself, which connects to humans. There are some things that one person cannot do by himself or herself. This also links to the different clouds and the sun because there are different weathers at different times and we need all of them to survive. All of these weathers combined makes a perfect life. Moving on to the tree, this part shows you the roots working toether to get the most minerals out of the ground. I have Pompe and I need help sometimes myself. All of this rounds up to the sign of togetherness, and Together We Are Strong!

Second Place: Kenshin Yamaguchi


Wonderful memories of a ski challenge this winter. Paper-cut Print.

 

Age 11-18

First Place (Tie): Lee Wei Ling


The blue color represents the sky surrounded by the white cloud. It's not possible to High 5 the cloud in the sky, just like I cannot be heal completely from Pompe disease. But, it's been my dream to be able to touch the cloud in the sky one day when I'm grown up.

First Place (Tie): Rimal Ghanem


Hello everyone, my name is Rimal. I'm 15 years old, and a Pompe patient. Already in a wheelchair, I hope one day I will be able to achieve my dreams. I make handicrafts like knitting and soap, and at the same time it can be considered as exercise for my hands. I would never let the disease stop me from doing what I love. Works like this make me feel independent and give me strength to keep fighting.

First Place (Tie): Ayesha Amerat


My piece shows that together with many different people, Pompe DIAGNOSED children and adults can fight off difficulties that may become an OBSTACLE in their life. This also shows that there is no impossible IN making one’s life better.

 

Age 18+

First Place: Karen Kacures


I made this video of Pompe people around the world and what they go through on a daily basis. Most get infusions every two weeks, and my video is to spread awareness of Pompe and give people hope to help find a cure. I try to help others through their journey with Pompe, but they are often the ones that help me, giving me a reason to advocate and hope for a brighter future. Together We Are Strong!

Second Place: Lucas Garrett


The clip shows me performing in a bar as a musician, something I do regularly. I do not let my diagnosis keep me from what I love doing the most, music. Cinematographer: Stephanie Revely of upst8musicfanzone.

Third Place (Tie): Meryl Sarah


This piece depicts that anyone (represented by Silhouettes) can become anything they dream of (represented by the things silhouettes are doing, Violet colored), with a little help, motivation, & inspiration from others, even if they have a disability (represented in yellow color). Hence the title "UNITED - TOGETHER WE CAN, TOGETHER WE ARE STRONG".

Third Place (Tie): Gemma Seyfang

Rare as rocking horses, that’s what we are, Join me as I share, a snippet of my life so far,
The difficulty I feel, to rise from certain chairs, and the way I struggle to climb up the stairs,
Often, passers-by presume that I’m drunk, ‘cos when I walk my hips sway to the front,
It is very easy for me to trip, stumble and fall, and if you’re with me this may make you feel uncomfortable,
I’ve been told there are only 42 people in the UK, who are being treated by the NHS today,
The treatment I’m receiving is aiming to keep, my muscles in a stable condition so I can stay on my feet,
My every day struggles include tying up my laces, Picking up something off the floor and reaching to high places,
Exercise is difficult even to walk for just a while, will make my muscles hurt and ache, even though it was just a mile,
Climbing in and out the car or rising off the loo, don’t get me started on shaving my legs, it’s difficult – it’s true,
My lung muscles are also weak, especially at night, it leaves me feeling unrefreshed when I wake with the morning light,
My family and close friends, are always there for me, I cannot thank them enough, and I love them, I hope this they can see,
This is my life, this is who I am, I will remain as independent as I can,
This disease is a part of me and so I must embrace it, become more knowledgeable, do all I can, so I can better face it,
Pompe Disease will continue to make my body suffer, but “Together We Are Stronger” is the motto that we mutter,
I am like a diamond, that is precious and Rare, I’m not like those stones that can be found everywhere.

Written by Gemma Seyfang, 26th January 2017, Essex, United Kingdom

Upon starting my enzyme replacement therapy, I wanted to help bring awareness to Pompe disease. I shared my poem publicly on Facebook. Many of those with Pompe disease stated that my poem was relative to them, too. I hope you enjoy reading it.

Honorable Mention: Jana Baranová


Maybe my life with Pompe doesn’t let me do things as I would like to do them, but the sun always comes up–even if we sometimes cannot see it. Although it is not always an easy journey, God gives me the power to go through it. And in every day you can find nice little things that make it more beautiful.

Honorable Mention: Raymond Saich



Rosewood and Wangi segmented turned bowl. This bowl is made of single segments, which are glued together to form a circle and then eight successive circles are glued on to build up and form the basic shape blank. The completed blank is then turner using a wood lathe and polished using a friction polish. The bowl is made of over 168 segments, each segment has little form but together they are strong. Together they stand proud with their peers and form a shape with beauty and grace.

Kim Dong Ho


Piece 1: When I was prostrated by sweltering heat in summer, I saw cockscomb peeped up through the window. Under the hot sun, leaf limped in the heat, but cockscomb looked even more pure and beautiful. At the moment, I admired cockscomb’s strength and courage. Holding a brush in my mouth, I started to paint pictures of cockscomb. As I drew pictures I bore a resemblance to cockscomb’s passion. As the drawing took shape of cockscomb, I smiled that I forgot that I was a patient. As days go by, I fell in love with cockscomb. In gloom and doom, Cockscomb seed was ray of sunshine. Cockscomb in cluster began to blossom, pulling together and hanging into faith and encouraging each other.

Piece 2: This world is too hard to live alone. However, if you go with someone, you can go any distance. You can do it regardless of falling snow, blowing wind, and the darkest day. You can cross windy fields, dangerous river, and even high mountains. Only if you can go with someone, because together we are strong. The background of drawing is Gam-cheon culture town located in Busan, Korea (so-called Santorini of Korea). There are small houses with colorful roofs and walls of primary colors. In the 1950s, the refugees' rough life was rooted in the place. Here you can see mixture of art and life where past and present coexists with each other.

Kok Joo Nyuk


I like to make pieces with my hands. I would like to learn more and do more. I hope people will like it.

Hiroki Okazaki


Smile for hope, living with family, living with Pompe disease. (Photo taken 7 years before, just before scoliosis operation. it needed about 10 hours and 4000ml blood.)

Barbara Schuler


Because I did not want to be restricted by the disease in my quality of life, I thought what else I can do? I could not do much more. But I found something. Today I make embroideries of photos. I am very proud of every picture and give them to friends and family.

Saam Amerat


Transcending Pompe.

 

The IPA would also like to extend a special thank you to our Judges:

  • Dr. Nina Raben
  • Prof. Dr. Benedikt Schoser
  • Wilma Treur

The IPA Board

IPD Supporters

Acid Maltase Deficiency Association (USA)
Acid Maltase Deficiency Association (USA)

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

New Zealand Pompe Network
New Zealand Pompe Network

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)

Hrvatski savez za rijetke bolesti (Croatia)
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Association Shifa des Maladies NeuroMusculaires (Algeria)
Association Shifa des Maladies NeuroMusculaires (Algeria)

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