Working with Pompe

Hello.

My name is Ikuo Kuribayashi, a member of Japan Pompe Association, age 58.

I work in Niigata-Meikun, a highschool in Niigata-city, by desk works.

Photo-1 is a snap of my desk.

It is difficult for me to stand up from chair, so I use stand support as

photo-2.

After stand up, I can walk with sticks as photo-3.

But if I fall down, it is very difficult to stand up again.

Teachers and students know about my disease.

They support me in highschool.

Photo-1,2,3 were taken by Hiroshi Idezuka, a student of Niigata-Meikun

highschool.

Thanks a lot for him, and thanks a lot for students and working fellows that

support me every day.

Star-shaped block by origami

Hello.
Now we are in a big trouble by COVID-19.
Not to be caught virus, we must not no-necessary touch with others.
This time, I decided to make Star-Shaped Block by origami.
It is able to create not touch others.

(Photos of making see below)

1. Start folding paper.
   How to fold in detail, see this site: https://weboo.link/article/7513?p=3
2. Create 12 units.
   Only green is not colorful that I used 3 colors.
   The colors are green, white, red, Italian flag colors.
   I wish this work is cheer for Pompe fellows, and Italian fellows.
3. Joint created units.
4. Complete!
   About 2 hours to fold units, and about 30 minutes to joint units.
5. Cherry on back.
6. Self photo.
   It is a little difficult to take selfie by digital camera.

I hope we will be recovered from this big trouble.
However we cannot contact in real, together we are strong.

Best Wishes, Ikuo Kuribayashi
Japan, age 57
Japan Pompe Association

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A challenge for future when I was a teacher

Hello.
My name is Ikuo Kuribayashi, a member of Japan Pompe Association, age 56.
On 1998, when I was a biology teacher in high school, I was diagnosed Pompe
disease.
That time, ERT was on investigation, nothing effective treatments for Pompe
disease.
But I had a dream that some of my students would find the way to cure Pompe
disease.
So, I challenged some plans on my students to have interest on biology.
This is a tool I created that time, to learn hormone names and effects,
Hormone Quick Check Origami.