The IPA would like to thank everyone who participated in the Talent of Pompe (ToP) Awards Contest on the occasion of the Fifth Annual International Pompe Day!
The IPA is very excited to announce the winners in each category:
Against ALL Odds Archie has been able to learn to communicate via his communication (ccs) book and his yes, no hand movements. After a year of development and support Archie is now able to write his own stories, unlocking his creative skills and imagination. Attached is a video of him composing a short story with the support of his teaching assistant. Archie has many other challenges in life being on a ventilator with minimal movements and many medical needs but despite all of this he is able to display his huge talent!
TOGETHER WE ARE STRONG
I AM NOT REALLY WRONG
THIS POEM ISN’T LONG
BECAUSE ITS LIKE A SONG
WITHOUT A GONG
WE SHOULD BE TOGETHER
EVEN IN BAD WEATHER
AND YOU SHOULD NEVER BE LEFT ALONE
EVEN IN YOUR OWN HOME
LIKE A LITTLE BONE
THERE WOULD BE NO HAPPINESS ON ITS OWN
YOU SHOULD NOT HIDE
OR LET TIME GO BY
WHEN PEOPLE GIVE YOU SIGHS
DON’T SAY BIG LIES
ABOUT YOUR HONORABLE DISABILITY.
This song is Golliwog’s Cake Walk by Claude Achille Debussy. I am ten years old. It is hard to keep good posture because of my disease while playing the piano. But I like playing the piano. I hope everyone will get more energetic and be happy with my music.
Together we are hopeful
Together we share our troubles
Together we lift each other up
Together we laugh
Together we love
Together we are one
“Together We Are Strong”.
I started to play saxophone, because my lung function was very bad. By playing the saxophone I trained my lung function and it improved a lot! I also started a crowdfund for the education of my dog and trained him as my assistance dog. And it worked! He helps me not to get overtired. Together we are sooooo strong! (in the video you hear me playing the cup song, my favorite song).
The theme this year is “Together We Are Strong.” I think this song powerfully represents the hopes and dreams of all Pompe patients collectively. Regardless of how difficult things get, our human resolve “keeps us stargazing” and fighting every single day, working towards something better
The IPA would also like to extend a special thank you to our Judges: