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Notes autocollantes


The association needs you, your ideas to live and renew itself.

So contact us and/or join us!

Notes autocollantes


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Action ideas for fundraising

- Have a flea market and the funds would go to KDVS (Albane)

- Make workshops for Halloween, dig pumpkins  etc and sell them. (Florina)

- See with President Macron (Anonymous)

- Organize races or walks for the benefit of the association (Jérémy)

- Sell Christmas / Easter chocolates (Kelly)

- Sell calendars (Céline)

- Sell a book about us  (Oscar)

- Sell KDVS T-shirts to show the association (Jérémy)

The organization of events is being considered by the Board of Directors. The fact that we are all over France is a wealth in terms of potential contacts but also a problem in terms of arms. For this type of local event, we therefore need everyone's help (identification of possible actions, local communication, presence on D-Day).

A trail has been planned for 2 years in the Somme and has unfortunately been postponed twice due to Covid. We cross our fingers for  may it take place in September 2022.

A book on the syndrome, in partnership with Valentin APAC already exists, you can get it  via this link:

T-shirts in the colors of the association have been created, you can get them here: (page under construction).

For President Macron, we let "Anonymous" take care of it and come back to us.

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Ideas for exchanges between families

- Possibility of having the email address of the parents and their place of residence for those who wish to give it (Jérémy)

This already exists through the geolocation map for those who have agreed to share their coordinates.

- Set up visios on common subjects (example: 1 problem = 1 solution) (Audrey)

We have been thinking about it for a while but we lack the human resources. If you are interested in facilitating this type of discussion (with or without external speaker(s)), contact the Board of Directors.

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Action ideas

- List all the support courses. E.g.: at 1 year old kinex2/week… for examples (Camille)

Our children are all different, have special and sometimes local care depending on their symptoms. It therefore does not seem wise to reference all the courses.

On the other hand, we have listed the points to watch out for on page: and which will allow your Kool Kid to have the appropriate course for their difficulties.

Message from Audrey that sums it up well:

"Each Kool Kid is unique. It is essential to review their abilities, their difficulties and not to compare with other Kool Kids. To compare is to clear our conscience. Let's get back to the human aspect".

- List the differences between different countries to realize that we are not so badly off (Audrey)

To carry out this work, several people would have to mobilize on the subject and then remain on the lookout for possible changes. Notice to amateurs!

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Communication ideas
medical information

- Gather and make accessible the literature on KDVS (Swen)

We try to make available on this site information and links to learn more about the syndrome. Retrieving scientific literature is, on the other hand, complicated because the publications are generally paid for and often in English. In addition, this generates monitoring work for which we do not necessarily have the time at present.

If you are interested in this work, do not hesitate to make yourself known to the Board of Directors.

- Leaflet explaining the KDVS syndrome to distribute to our treating physicians, clinical genetic counselors, etc. (Benoît)

In 2018, we participated in the translation of the KDVS specific Unique booklet, online since its release in 2019, you can find it here:

For a first contact or a less informed public, you can also use the association's brochure:

- What tools to explain the difference that continues to scare others, even our loved ones? Audrey

First, suggest that they spend some  time with our children and to exchange with us, parents.

But also all the tools available, this website, social networks, the Unique booklet, the association's brochure, the testimonial book...  

No magic tool, everything depends on the degree of reception of the person in front of you and the most suitable means for learning (exchange, writing, image or other).

Notes autocollantes


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Website ideas

- Recreation of Kool Kids (Sabine) - Created, you can participate

- Specialized educational establishments (Sabine) - Created

- Siblings page to illustrate the strong ties between brother and sisters in a Kool family (Gaëlle) - Created, you can participate

- Protection of adults (Sabine) - Created

- MDPH files help  (Leslie) - Created, you can send your letters, life projects or other requests that allowed you to win your case in order to serve as a model for other families

- Tips and tricks (Sabine) - Created, also share the  yours!

- Living with Disability (Sabine) - Created

- Make an intellectual disability page (Sébastien) - Waiting for content from Sébastien

- Wall of ideas (Sabine) - Created, it's up to you to feed it!

- Procedures for citizen day  (Magali) - To be built

- Testimonials from parents (Magali) - To be built, for this we need you!

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Ideas for communication tools

- Create a film presenting the syndrome and the association for forums or other external events and presentations

The movie is under construction

- Create a kakemono and a tarp for forums or other external events and presentations

Created by Carine Vasseur

- Create a newsletter for members, partners and patrons.

Created and distributed by David Chaix

Notes autocollantes


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Place and date of next family reunion

- Make the next grouping in the summer in a water park (Louna)

- Make the next group in an amusement park (Oscar, Déborah, Florine)

- Make the next grouping in a village hall (Angélique)

We will be able to study these 3 proposals depending on the season and the content chosen for the next grouping (playful and/or informative).

If you have your tickets to a theme park, we are interested in information and/or contacts.

- Organize the next group in French-speaking Canada (Philippe)

A reunion in Canada seems a bit difficult to organize remotely (not to mention the financial aspect for the association and the families).

- Organize the next gathering at Christmas (Mathéo)

Christmas is culturally a time spent with the family, we will probably not accept this proposal even if we are the Kool Kids family.

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Organization ideas
next family reunion

- Approach the GMF or the La Poste foundation to finance the next grouping (Philippe)

For the moment, the foundations contacted do not finance this type of event but rather equipment. We are also thinking about orality and reading learning kits that we could try to finance in this way.  

However, we will contact the GMF and the La Poste foundation  for the grouping, you never know.

- A good cook (Anonymous)

We are waiting for the demonstration of your talents, Anonymous

- Prepare song playlist for dancing or taking a DJ (Anonymous)

We try to reduce costs as much as possible for families, so a  DJ it seems complicated, on the other hand establishing a playlist should be possible.

- Make a pignata (Anonymous)

Possible activity to propose depending on the theme of the group.

- Make badges with photos of our Kool Kids (Jérémy)

This means having the permissions to broadcast photos for all Kool Kids (which was not the case at the last Reunion) and sending a photo within a defined time frame. To try.

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Topic ideas
next family reunion

- Means to accept the handicap (Audrey)

- Emotional and sexual life (Coline, Sabine)

- Exchanges in small groups on the experiences of parents (Coline)

- Hyperactivity / Emotional Intelligence... (Anonymous)

- Group of words between KDVS (Anonymous)

- Reflection on validism (Coline)

- Continue the Siblings workshops (Kelly)

Send your ideas that the Board of Directors will discuss but also your photos, films, drawings, texts to illustrate existing or future pages to

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