2021 GROUP

Already 22 families registered (85 people)

Already 67 beds reserved out of 112 possible

From the creation of the association in 2018, we had this ambition: to share a human adventure during a large reunion of families.

In addition to this, you need to know more about it.

Indeed, if families have already crossed paths because they are geographically close or during personal travel, our association wishes to offer a larger grouping during a seminar including interventions by professionals.

This would allow many informal exchanges during meals and evenings but also more specific exchanges during conferences on subjects concerning us all.

The Board of Directors is now working on the organization of this event.

The date and place are already fixed, it is the weekend of October 30/31 and November 1, 2021 in Blois, so mark your calendars!

We made the choice of a fairly central city or at least easily accessible by highway or train since we are dispersed throughout the country, that fifteen families have already indicated to us wanting to participate and that by then, to other families will certainly arrive on our Facebook parents page and will also wish to join this project. We will therefore meet in Blois where we have found a place that we have been able to privatize and allow the reception of 120 people.

In addition to this, you need to know more about it.

This weekend will be accessible to all Kool Kid families, whether or not they are members of the association, and we are doing our best to ensure that a preferential rate is possible for member families.

We thank you for relaying our appeals for donations, for making requests for funding assistance via your companies, your mutuals, your banks or any other means within your possibilities to help us make this weekend happen at a lower cost for you.

You want to help us more actively, you are welcome!

I give and I receive a tax receipt for my tax deduction of 66% within the limit of 20% of my income

A big THANK YOU to the 104 donors of the 2020 crowdfunding who allowed us to raise 6790 Euros.

This sum should already finance the interventions of professionals and animators who will take care of our children during the conferences.

2021 GROUP

During this weekend, we would like to welcome a professional in genetics who can explain the syndrome and the current work to us, allowing us to consider the future more calmly. We are in contact with Génida and Alliance Maladie Rares who are interested in participating in this meeting.

The other subjects remain to be defined in connection with the families present, here are some ideas but do not hesitate to contact us to give us your opinion or to share yours with us:

In addition to this, you need to know more about it.

  • language,

  • sleep,

  • different reception facilities for children and adults,

  • inheritance tax and life after our death,

  • future / autonomy / adult life,

  • sentimental and sexual life,

  • epilepsy

In addition to this, you need to know more about it.

If you are a professional, you read these lines and are interested in sharing your knowledge with families, you want to get to know us, do not hesitate to contact us.

Are you a parent of Kool Kid and still hesitate to participate?

You are not alone, this hesitation was mentioned by some members during the last General Assembly. Parents like you indicated that they were probably not yet ready to participate in this type of weekend.

Many have had to change their minds after hearing from those who have already met other families, regardless of the setting or age of the children, because all said they found it very positive for themselves, their kools kids but also the siblings and all added that they were eager to find each other.

A mother's return testimony.

"From experience, and to reassure you, during this type of grouping, we are all there because we live the same joys, pains and questions. Also, even if we do not express them in the same way, meet others people do a lot of good. We recognize ourselves, we no longer feel alone in the world. It allows us to recharge our batteries thanks to sharing. And then, we are not just talking about disabilities, they are also festive moments.

With my husband and my daughters, we made our first groupings in England (2) then at I. and P., parents of a Kool Kid wishing to meet others (2 too). Each time, everything was very simple, we felt like we were part of a new family, family of hearts and common struggles.

I remain persuaded that whatever our state of mind, our capacities to accept the handicap more or less quickly, these meetings make it possible to make a leap and to assert oneself as parents, parents of handicapped child. And this is also valid for siblings who see that other children, adolescents, and even young adults experience the same thing as them and do very well. They too can share with peers and without parents. "


We remain of course at your disposal to discuss this subject if necessary and you will find reports on past meetings on the parent pages of the WEB site. If even after all this you do not feel ready right away, it does not matter, we hope to organize other events of this type in the years to come.