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