Solidarity Week Accor Hotels

16 Jan, 2019, No comments

Thanks to the commitment of the teams involved in the Solidarity Week 2018, Accor hotel event , a sum of 1200€ has been recolted for the benefit of our association. We are grateful to the staff and the Direction of OREA HOTELS MANAGEMENT Accor Hotels who have shown their support and solidarity. This operation will allow us to finance future actions for our children.

SOLIDARITY WEEK ACCOR HOTELS

5 Dec, 2018

More than 20 hotels in Paris (OREA HOTELS MANAGEMENT) have chosen to support our Association within the framework of the Solidarity Week Accor Hotels from December 10 to 16, 2018. The teams will support us by selling our MED13L bracelets and meringue sachets made by the famous Bakery "Les Mignardises" from Clichy La Garenne and financed by Europroh Hospitality and Technology. Customers will also be encouraged to make a donation or to make us known to the key persons in their companies. The MED13L network is growing up!

And of course, all the profits will finance our 2019 actions

Commitment of the Accor hotels:

Ibis Paris Levallois Perret

Ibis Clichy centre mairie

Ibis Saint Denis Stade Sud

Ibis Paris Vaugirard Porte de Versailles

Ibis Paris Boulogne Billancourt

Ibis Daumesnil Porte Dorée

Ibis Styles Asnières Centre

Ibis Styles Paris Opéra La Fayette

Ibis Styles Parc des expositions de Villepinte

Ibis Styles Paris Eiffel Cambronne

Mercure Paris Le Bourget

Mercure Suresnes Longchamp

Mercure Paris Saint Cloud Hippodrome

Mercure Paris Levallois Perret

Mercure Paris Pont de Levallois Neuilly

Mercure Paris Opéra La Fayette

Mercure Paris Opéra Faubourg Montmartre

Mercure Paris Place d'Italie

Mercure Paris Malakoff Parc des Expositions

Mercure Paris Bastille Marais

Mercure Maurepas Saint Quentin

General Assembly on December 7

24 Nov, 2018

Our first General Assembly will take place at the National Rare Deseases Platform in Paris on December 7 at 6 pm. Dr Marc-Henri Bourdon will make a presentation of the studies he has been undertaking for more the 25 years with his team on the MED13 and MED13L genes. His conference will be also available by videoconference for the members.

A distinguished biologist at our Scientific Board

24 Nov, 2018

Dr Henri-Marc Bourbon has been working for more than 25 years on the multiprotein Mediator (MED) complex which has a very important role in genes regulation. He is the "inventor" of the MED13L gene (MED for Mediator, number 13, and L for "like"). His team takes advantage of the Drosophila genetic model to investigate the molecular bases underlying the functional specificity of dedicated MED subunits in the transcriptional control of cell fate specification in-vivo.

MED13L conference by Dr Ghoumid

7 Oct, 2018

Pleased to share with you the conference given by Dr Ghoumid, an MED13L expert, at our first family meeting, on Sept 30. Click on the link below to read the English text

Conference_30_sept_2018-1.pdf

Meeting with families

30 september 2018: First MED13L meeting in Europe

22 Sep, 2018, No comments

Proud to inform you that the first meeting of # MED13L families will take place in Paris, this Sunday 30 September with Dr Jamal Ghoumid, genetician at Lille Hospital who will talk about ongoing research he is conducting on the syndrome with Dr Thomas Smol (Lille Hospital too). Twelve families will make the trip from all over France: Nantes, Bordeaux, Lyon, Angers, Lille, Bethune, Strasbourg, and of course Paris to gather around a buffet, and discuss future projects of our association.

A video will be available with subtitles in English later

The Mickleburgh Family

6 Aug, 2018, No comments

Joanne Mickleburgh, our UK correspondent, and her Brother and Sister , David and Angela, completed a 10k run through Run Norwich UK , yesterday 5 august, whilst raising funds for MED13L association. They have collected 345£! This smart family initiative demonstrates that courage and energy lead to great results.

Thanks to David, Joanne and Angela

Well done, girls!

MED13L correspondent in Germany

3 Jul, 2018, No comments

Silke Groth is 12-year-old Sina's mom and lives in Berlin. She works in the disability field and accepted to be the MED13L SYNDROME correspondent in Germany. We will have the chance to have soon a version of the site in German, which will allow us to reach more families. Silke will identify all scientific researches in Germany, raise awareness among institutions and animate the group of German families.

Also in project, the creation of a forum allowing the families which are not on Facebook to be able to share easily on our website.

June 24-Heroes of Paris

24 Jun, 2018, No comments

This morning, Philippe, Cedric, Sabrina and a lot of friends, supported by the team of Je Cours Pour Toi (I run for you) run 10 km for our children, within the framework of les 10km de l'Hexagone. Nothing is impossible when strength meets courage!

THANKS YOU FOR YOUR EFFORTS !! especially Sabrina Boutros who is the origin of this event

A champion is born!

MED13L correspondent in UK

20 Jun, 2018, No comments

Joanne is the Mother of Chantelle, who is 16 years old. Chantelle has been diagnosed with MED13L Syndrome, and they both live in Norwich, East Anglia. Joanne has accepted to be our UK correspondent and her duties will be:

- To raise awareness about MED13L Syndrome in the UK towards the national rare disease organisations ( Rare disease UK, Genetic alliance UK, NORD...) and the social and medical sectors.

- Be the first contact for UK families.

Joanne is doing a 10k run through Run Norwich on 5/8/18 with her Brother and Sister, to help fundraise and raise awareness for our MED13L association. Let's support Joanne and her family!

https://www.justgiving.com/crowdfunding/j-mickleburgh?utm_source=Facebook&utm_medium=Yimbyprojectpage&utm_content=j-mickleburgh&utm_campaign=projectpage-share-owner&utm_term=2awp95nGD

Running in Paris on June 24

18 May, 2018, No comments

Sunday 24 June at 10:00 am, the MED13L SYNDROME association participes in a running organized by les 10 km de l'Hexagone, Paris

The participating MED13L members and friends will be supported by je cours pour toi (I run for You), an association of athletes who want to make sense of their efforts by serving a cause.

For Caroline Caumon, President of Je Cours pour toi, "it is very important to support new associations such as MED13L SYNDROME, to give them more visibiliy and efficiency.

If you want to participate in the event, run with us, for our children, to show them your support, contact Sabrina Boutros or Philippe Pupin : contact.med13L@gmail.com

below: Sandrine Jouot and Caroline Caumon, from "Je Cours pour toi"

A new logo by Morade Rahni

9 May, 2018, No comments

Morade Rahni is the father of two beautiful children from Toulouse (France).

He has worked for 10 years in the cartoon industry. He is a talentuous storyboarder for different series like Miraculous, Ranch, Trullitales ....

Friend of Sabrina Boutros (Vice President of the Association), Morade wanted to participate in the project by creating a new logo

Thanks to Morade and his generous talent!

http://moraderahnipro.tumblr.com/

Constituent assembly

2 Mar, 2018, No comments

On March 2, 2018, three French families met in Paris and the Constituent Assembly of the Association was created. These three isolated families had been able to make contact with each other previously through a Facebook group of "Simons VIP Connect" from the Simons Foundation Autism Research Initiative (SFARI) in New York.

Around a happy meal organized by Caroline and Philippe, the association started with the following distribution of roles:

Françoise Ropert Conquer: President
Sabrina Boutros: Vice President
Philippe Pupin: Treasurer
Cédric Boutros: Secretary

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