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Donate to research on #GivingTuesday – the most generous day of the year

10.11.2021

This year, we are joining the Giving Tuesday World Day of Generosity and introducing the project ONE STEP CLOSER TO HEALING FOR ANGELS.

For the sixth year, the Czech Republic will join Giving Tuesday, the world’s day of generosity and good deeds. This year’s edition falls on Tuesday 30. November 2021.The non-profit organization ASGENT will participate in Giving Tuesday for the third time with its unique project to support rare disease research.

World Giving Tuesday encourages and celebrates the desire to help. The whole world, including the Czech Republic, will be on Tuesday 30. November 2021 will unite to do good. Giving Tuesday in the Czech Republic since 2016 has been represented by the Association of Corporate Social Responsibility.

Giving Tuesday was created in 2012 with a simple idea: to create a day that inspires people to do good. Over the past few years, this idea has grown into a global movement that inspires hundreds of millions of people around the world to give, be generous and work together.

Positive messages full of hope have never been more needed than right now. Those wishing to support the precious on the most generous day of the year can visit https://www.darujme.cz/projekt/1203666.

New project “Bake for the angels”

They support us

23.09.2021

With this contribution we would like to thank the grandparents of little angel Kryštof for their project “Bake for the angels”.

The “sweet breakfast” project was founded by the grandmother and grandfather of a boy who was not lucky enough to be born as a healthy child. Krystůfek suffers from a very rare genetic disease – Angelman syndrome.
At the Hotel Na Vyhlídce in Kořenov you have the opportunity to have breakfast knowing that you are helping to support a good cause. The Kryštůfek family has decided to send the proceeds from the sweet breakfasts to support the research conducted by Czech scientists working with the Association of Gene Therapy (ASGENT), whose work is to understand the exact cause of the disease and thus find a possible mechanism of treatment.
It is the family’s wish that as many people as possible learn about Angel Child Syndrome, as it is also called, through “sweet breakfasts”. Because believe me, living with an “angel” can be hell!
Come for a pleasant stay in our beautiful region to the hotel Na Vyhlídce in Kořenov.

Thank you for your support!

New member of the expert board – MUDr. Alena Zumrová, Ph.D

Asgent activities From research News

10.04.2021

We are incredibly honoured to welcome a new addition to our team on the expert board. We greatly appreciate the doctor for her lifetime of experience in neurology and her willingness to support patient efforts.

Our core mission is to bridge the worlds of science, medicine and patients. Thanks to the doctor, that will be a little easier again. As a first goal, she and I set out to find out the current real number of patients with Angelman syndrome in the Czech Republic. If you were surprised that such an elementary figure is missing, it is indeed a sad fact. There is no institution in the Czech Republic that is obliged to publish such data. However, knowing the most accurate number of patients is essential for any further action. All in accordance with GDPR, of course, we are concerned with an anonymised aggregate count of all patients like Oliver.

Doctor, welcome to the team. We’re really excited about this.

MUDr. Alena Zumrová, Ph.D.

She has been working since 1982 at the Department of Child Neurology at the 2nd Faculty of Medicine, Charles University in Prague and Motol University Hospital in Prague.In 2008, she founded the Motol University Hospital Hereditary Ataxia Centre with nationwide coverage, which in 2018 was awarded the status of a reference centre within the European Reference Network for Rare Neurological Diseases (ERN-RND). It focuses on neurodevelopmental, neurometabolic, neurodegenerative and neurogenetic rare diseases.

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