The trisomy 21 research group

People with a trisomy 21 have Down syndrome.
That is because they have the genetic material on the 21st chromosome 3 times.
Why that is the case is unknown.
That is a fascinating question.
Many research teams are concerning themselves with that question.
Including the Trisomy 21 research group.

This group exists since the 14th of May 2014.
This research group has members both with and without Down syndrome.
All want to gain expert knowledge on these topics:

• Trisomy 21
• Down syndrom
• Chromosomes
• Heredity
• Cells

They want to find out everything on these topics.
They want to do research on them.
They want to speak to experts.
They are allocating a long time for this: 2 years.

The trisomy 21 research group wants to verify, for example, if it is true that people with Down syndrome really have 47 chromosomes.
How do you do that?

For that you have to know:

Every adult has many body cells: 100 billion.
One billion is a number with 12 zero's.
This is what one billion looks like: 1 000 000 000 000.
100 billion look like this: 1 00 000 000 000 000.

Human body cells are very small.
So is the cell's nucleus.
You can't see the cells with the naked eye.
And of course you can't recognise the chromosomes either.

So, what do you have to do to count your own chromosomes?

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Now we continue on to the trisomy 21 research group logbook:

Attention: Sometimes technical terms will be used.
Soon we will offer a glossary. Then every interested person can look up every technical term or foreign word.

On the 6th of May 2014 the trisomy 21 research group went to visit a chromosome laboratory.
The „Praxis für Human-Genetik" with Dr. Regine Schubert in Cologne.

There the team discovered what a microscope is.
And that it is helpful to look through a microscope if you want to recognise cells and chromosomes.

A film team from the broadcaster MDR accompanied the group. A segment in the German language show „Moderne Diagnostik - Eine Welt ohne Behinderung?" can still be seen on YouTube.

Ansgar Peters is a member of the trisomy 21 research group.
He writes:

„We were in a chromosome laboratory with Dr. Schubert.
I liked it a lot.
The day was fabulous, I have to say.
It was also very exciting.
I just find it so clever, that they showed everything about trisomy 21.

The chromosomes are invisible.
You can't recognise that.
She explained again:

You need these things, so you can look through them - microscope.
Then you can also directly look at these cells.
And you need colours. The centre of the cells were coloured purple. Exactly - purple.
What I also really liked was that the lady showed the cells about the child that's not been born yet.

I wanted to know: Why is it so important to examine the chromosomes?"

Julia Bertmann is also interested in chromosomes.
She writes:

„We learned a lot about chromosomes.
We saw different chromosomes.
What surprised me were the colours of the chromosomes.
The colour was purple.
Actually the chromosomes are yes, invisible!

The Doctors hand over the blood to the laboratory.
This blood is examined for chromosomes.
They look at the babies.
How the babies are growing in their mum's tummy.

It surprised me that a person has so many cells!
In fact, 100 billion cells!

For me the highlight was to look through the microscope.

I was impressed, all those chromosomes.
I didn't know that the chromosomes have such a long chain!

I was impressed, all those chromosomes.
I would like to know more about it."

On the 31st January 2015 the research group watched a chromosome animation. Together with the Xe:nius Arte team.
The film was about the question: "How does a trisomy 21 actually come to be?"
Here you can watch the film.

On the 25th july 2015 in Cologne the group met with the Artists Jeanne Marie Mohn und Liz Coleman from Frankfurt at the Museum für Ostasiatische Kunst.
The group visits a BORO Ausstellung.
Precious japanese wall-hangings are on display.
That day the team decided that there should be a big chromosome wall-hanging for the TOUCHDOWN exhibition.
Jeanne Marie Mohn and Liz Coleman will create it.
The wall-hanging will be 2m x 3m in size.

The trisomy 21 group will supply all the necessary information for it.
For example how many chromosomes will be seen on the wall-hanging, in which size and in which pattern?

On the 11th of August 2015 the trisomy 21 research group looked at the chromosome theory.
Questions arose:

(1) How do you best count chromosomes in a photograph?
(2) How are chromosomes different from each other?
(3) How big should chromosomes on the 2m x 3m wall-hanging be?

Here are the answers:

(1) By crossing out the counted chromosomes with a pen.
So you always know which ones have been counted already.

(2) Chromosomes have different lengths. They also have different stripe patterns (the technical term is "chromosomal banding")

(3) Chromosome 1 on the wall-hanging has to be 41cm long. The length of the other chromosomes still needs to be calculated.

Marc Lohmann was present for this meeting.
He dictated:

„Now I will tell you, how it was when I sorted chromosomes for the first time:
I have 47 chromosomes and xy.
My disability, in 100% of my cells.
That is quite a lot.

There is a big board and there are chromosomes constructed and different kinds.
And I looked at photo cards, well, tiny little parts and also long chromosomes. And another shape, how they look.

Chromosomes, they also glow, very small, well like tiny particles, and have also glowed very bright."

Next, the trisomy 21 research group will look at Dr. John Langdon.