Are we doing our best for the health of people with trisomy 21?

World Youth Alliance in collaboration with Jerome Lejeune Foundation and two members of the European Parliament (MEPs) Miroslav Mikolasik and Marek Jurek hosted a debate with people with Down Syndrome and renewed European Researchers C. Mircher, L. Meijer, M. Dierssen, Y. Herautl and J. Fortea on the 21st of March 2017 in the European Parliament. MEP Peter Liese and the president of the European Parliament, Antonio Tajani, were also speakers at the conference.

Other MEPs present during the conference were MEP Skripek, MEP Morgano, MEP Plura, MEP Petir, MEP Lybacka, MEP Zuscinova, former MEP Casini, MEP Ujazdowski and MEP Buzek who launched the social media #socksbattle4ds Campaign.

Mr. Mikolasik said that there is “too much selfishness in our world”. Many countries want to free their country of children with problems. But “today is a day that needs to be linked to solidarity with children with problems. We have to ask ourselves, “how can we help each other to help to carry this burden together”.

“There is nothing about us without us”. This slogan was stated by MEP Liese, to demonstrate the idea that “no policy should be decided by any representative without direct participation of members of the group affected by that policy”.

The presence of people with Down syndrome during the conference marked the importance to fight marginalization of this group from political, social and economic opportunities.

Doctor and researcher C. Mircher introduced the institute Jerome Lejeune and its objectives: first, the institute takes medically care of people with Down syndrome from birth throughout their whole life. In France, there are around 50.000 people with Down syndrome.

The institute does also clinical research, which is enabled through their biobank. A biobank is “a type of bio repository that stores biological samples for use in research”.

Their research is focused on the improvement of cognitive functions of people with Down syndrome, but also reach out to other deceases. “Shoot for the moon even if you miss, you will land among the stars” this quote from Oscar Wilde explains that if you are aiming for something, even if you don’t achieve it, you will still be somewhere better than were you started. So research is something which must be done!

Last but not least their aim is also to be a referent center for training and information, helping families, caretakers, and professionals to support people with Down syndrome.

During the conference, an unexpected speech came from the president of the European Parliament himself, Antonio Tajani. He said “we are talking about freedom here; at the center, we need to put the freedom of our citizens. We need to live freedom day by day, we need to give people with Down syndrome the right to be active stakeholders and give them the right to work in our society. We must give the possibility to those young people to go to school, to defend their own freedom and liberty”. He mentioned some examples of good practices such as Melanie Segart, who presented the weather a few days ago in the media.

“We have to work for the next budget, to establish the right to freedom”. Those were promising words from the president of the EP to give more money to improve the quality of life of people with Down Syndrome.

Professor and researcher Mara Dierssen explained the case of Dyrk1a, which has an important role in how the neurons work.

DYRK1A activity reduces plasticity and leads to learning and memory deficits.

She said that “early cognitive intervention is the only routine therapeutic approach used for amelioration of intellectual deficits in individuals with Down’s syndrome, but its affects are limited. We hypothesized that administration of a green tea extract containing epigallocatechin 3-gallate (EGCG) would improve the effects of non-pharmacological cognitive rehabilitation in young adults with Down’s Syndrome.”

EGCG normalizes DYRK1A activity, which boosts neutral plasticity and improves cognition. A pilot study with ECGC shows that EGCG improves functional connectivity in the brain and corrects dendritic pathology. When plasticity and functional connectivity are increased, people with Down Syndrome have more abilities to work.

She concluded that “down syndrome can be treated with targeted therapies designed to interact with a special molecular target associated with cognitive impairment. Targeted Dyrk1A therapies can improve cognitive function increasing functional connectivity and cortical excitability in the brain.”

Her message is to enable people with DS to speak up, be heard and influence government policy and action, to be fully included in the community. She also proposed to establish an EU alliance for Down Syndrome research, because research on intellectual disability therapies is a benefit for all: “Better treatments for other cognitive disorders such as Alzheimer; Improvement in patient’s integration in education and workforce: Reduced need of care; Reduces disease treatment cost.”

Doctor Y. Herautl demonstrated that data showed that during the last 60 years, people with down syndrome’s life expectancy increased from 12 to 6o years! He also drew a link between Alzheimer and Down syndrome: “Alzheimer’s disease in the main medical problem and cause of death in adults with down syndrome.”

He said that “research in Down Syndrome is essential to enhance their quality of life it a unique research opportunity: Help them, help us!”. According to him, Europe is in the best position to lead the research in this area because Europe has the numbers, the health system and the scientists with the will to do it.

“Not perform research in people with Down Syndrome is a new form of discrimination!”

During the last part of the conference, three young ladies with down syndrome took their place at the panel desk among the speakers, where they could ask the speakers several questions, and provoked the MEPs to establish a budget to fund research in the areas of down syndrome to increase quality of life of people with down syndrome.

Written by Marie-Christine Alting von de Geusau WYA Europe intern.