News

On this page we would like to keep you posted of our recent promotions, developments and successes. These will also be published on our social media.

30 August 2020

When two Foxes meet … Pippa and Fenn, both kids with FoxP1 syndrome, had a fantastic afternoon today, also with Pippa’s brother, Sam! For a number of weeks we from Stichting Kind Beter have been in contact with the parents of Pippa, Tom and Annemiek …. We have discussed Tom’s great plans … more about that soon, but take a look on

Walking in her Shoes

Sometimes you just have one of these awesome days!

29 August 2020

You haven’t heard much from us in the last few months. First, we didn’t think it was really appropriate to raise funds in Corona time, when so many people had something else on their mind. In addition, of course, we suddenly had a challenge with working from home and Fenn at home full time. The time at home was, like everyone else, especially nice, but also tough, fun and difficult at the same time. Fortunately, the little cheerful boy goes to school again on Monday and we can also pick up the thread for our Foundation. Corona is far from over, but we still want to get back to work for Foundation Child Better. Simply because we believe in our ultimate goal. A solution for FoxP1. A lot has happened behind the scenes in recent months. In the coming days / weeks we will tell you more about this …

29 February 2020

Great news and certainly on RARE DISEASE DAY! Because the RNA therapy can also be a way to treat certain forms of FoxP1 syndrome. Of course we will continue to collect the funds for the major research with KindBeter, but this method could also bring a lot… Thankful that we are in close contact with dr. Van Roon and the LUMC!…

https://www.lumc.nl/over-het-lumc/nieuws/2020/Februari/rna-therapie/

23 February 2020

Having a rare syndrome is difficult… a low number of patients, but above all little is known about symptoms and future expectations among doctors. To hear if new information is available, we meet once a year with our clinical geneticist at the LUMC … Last week we had a meeting again … No news that we had not already collected ourselves, unfortunately, but we always make a nice afternoon of it! What is very nice is that the clinical (treating) geneticist also knows our dr. Van Roon (research geneticist)! That way we keep the circle closed.

16 February 2020

Now on sale! KINDBETER bags! A few months ago we already let you know. FoxOriginals has been kind enough to print free bags for us. Really amazing! So buy a KindBeter bag now and support our Foundation. Send a message with your name, address and place of residence to kindbeter@ziggo.nl.

Transfer Euro 7,- to Bank account number NL91INGB0008735172 and we will send the bag directly to you! The profits will go entirely to our Kind Beter Foundation.

12 February 2020

After a short one-month break after all the hustle and bustle of December, it’s time to restart! We have been actively recruiting for about 8 months now and we are proud of what we have achieved .. more than 20% of the budget has been received, our geneticist is in regular contact with America about the research there and we have a lot of contact with Dutch parents .. A great result! Thanks to everyone who helped in any way. Stay tuned, because there a lot of plans for the coming months!

01 January 2020

On the last day of the year, we have received a big donation from a FoxP1-family…. Amazing!!! Just going passed the 20% on January 1, 2020! It must be a sign that 2020 is going to be a good year! A happy 2020 to everyone!

23 December 2019

Thanks to all who have supported us!

20 December 2019

A real photo and video shoot for Kind Beter in the LUMC … with a real press/media pass!

10 December 2019

One of the things we came up with was to place brochures at notary’s offices throughout the Netherlands. So great that a good friend visits a notary in Arnhem and sees our brochure! Awesome! Spread the word!

3 December 2019

Didn’t spent all your money on Black Friday and Cyber Monday?
Today is Giving Tuesday! Remember us!

29 November 2019

We have raised a nice amount with the action we did for the Vriendenloterij. But because we have written to so many people, all sorts of spontaneous donations have been made since to our Foundation. There are also many friends and parents of FoxP1 kids who themselves arrange small actions or have asked their friends to donate! Thank you all!

A whole percentage has just been added. Super!

26 november 2019

A very personal news item this time … Because of the sensory integration disorder associated with FoxP1 syndrome, some everyday activities are anything but everyday for us.

For Fenn, a visit to the hairdresser means pure panic. Hair and especially loose hair are soft and therefore dirty and reason for him to become very nauseous and eventually even throw up. Logical, no … but nothing about the FoxP1 syndrome is logical. We learn to cope with these kinds of symptoms by trial and error.

So every 6/7 weeks we go to the hairdresser with a bucket, towel and the necessary distraction. Fenn short hair, mum a few extra gray hairs. Fortunately we have found my sweet primary school girlfriend willing to take on the not so thankless task of cutting Fenn’s hair. (Thank you, dear Suzan!)

At least this is a place where Fenn feels safe. And who knows, maybe he will get used to it …… someday.

23 November 2019

Again we received a fantastic amount of no less than Euro 5,000 from Stichting Retourschip! https://stichting.moment.online/stichting-retourschip. We are so very happy. Some extra percentages added …

20 November 2019

LEIDEN meets NEWYORK! Last Monday “our” geneticist Dr. Willeke van Roon visited the Seaver team of the Mount Sinai hospital in New York. To discuss their and our possible FoxP1 research. So proud that we were able to set this up! To be continued…

15 November 2019

Happen to see the NOS news on the NPO at 8 p.m. tonight?
A great item about the Radboudumc, using exactly the same brain-on-a-chip technique as “our” research in the LUMC, that is on the trail of a medicine for the treatment of a genetic disorder (a rare syndrome). That proves once again that it really can become a reality. We continue the work for our foundation to be able to start the research on FoxP1!

https://nos.nl/artikel/2310582-mini-hersenen-kweken-om-aandoeningen-te-begrijpen-en-medicijnen-te-testen.html

13 November 2019

Posted on our social media platforms today; In the last few weeks, you might have read that there are already two companies that made a great contribution to the Foundation. CineFox, with the broadcasting of our short movie and Fox’s Originals that is printing our own Kind Beter bags. But your company can also just have a different name… 😉

Do you want to contribute with a action or do you have an idea for an exciting contribution. Please let us know. All help is welcome!!!

Idee

5 November 2019

… And the you suddenly find yourself in a telephone conference with the LUMC from Leiden and the Mount Sinai Seaver Institute from New York. To discuss the research that is already being done in the USA and the research that we want to start.OUTCOME; our geneticist extends a trip to the USA with a day in New York and will visit the Seaver Center to discuss this further!…

31 October 2019

What a great night we had yesterday… We had a full evening of calling to get friends and family to become a member of the ‘Vriendenloterij” (a Lottery). Not only did we get the starter bonus, but also the extra bonus because we’ve found so many people willing to buy a lottery ticket and support us. So cool!!! An extra percentage to the budget… And in the coming months a nice fixed amount from the money of all the lottery tickets (half of each ticket goes to our Foundation).

Thanks to everyone who bought a ticket and also to Caroline, Sylvia and my dear mum for helping us!

26 October 2019

Just another day in October! Yesterday we had a great day at Scheveningen beach. Another Fox family came all the way from Limburg to The Hague just to meet us! Siem and Fenn had an instant connection ….

Processed with MOLDIV

October 23rd, 2019

Another Fox company that wants to help … Fox Originals from Weesp has offered to have free bags printed for us! What a great offer! The bags will soon be available for sale on our website. Of course, all returns will go to our Foundation. https://www.fox-originals.com/
Thank you so much Fox Originals !!!

October 19th, 2019

Just a small message to thank all our friends, acquaintances and family for the donations and help they have given our Stichting Kind Beter. Thanks also to all anonymous donors who made a contribution through the platform Geef.nl! We cannot thank everyone personally, but a very big thank you this way!

October 15th, 2019

Of course we receive rejections, but today we had a huge success and we don’t want to keep that from you … C.J. Vaillantfonds has made a donation of Euro 15,000. What a large amount. Very happy!

October 8th, 2019

One of the first things we did was writing a request to different equity funds. Equity funds who support Foundations, Charities and Scientific research. We can’t wait for the reactions!

October 4th, 2019

As mentioned in one of our previous posts, we have approached quite a few companies with the wording ‘FOX’ in their name. We have received a fantastic offer from CineFox. In the coming weeks, a short movie will be running at 30 locations throughout the country in the foyers of cinemas, bowling halls, etc. What an great gesture and what a national reach we get as a result! Thanks to www.cinefox.nl!

and to Timo Smits for creating the video!

KindBeterShortmovie

October 2nd, 2019

Foundation Child Well (Stichting Kind Beter) joins “de Vriendenloterij”
Half of each lottery ticket goes to our Foundation Child Well (Stichting Kind Beter) and if we recruit enough new members we also receive a nice bonus.

Do you want to buy a ticket in “de Vriendenloterij” and support Foundation Child Well (Stichting Kind Beter)?

The rules;

  • let us know in advance by email kindbeter@ziggo.nl if you want to play and provide us with your telephone number.
  • We will call you on the evening of Oct. 31 between 7 p.m. and 9 p.m.
  • we register you for participation.
  • you play in “de Vriendenloterij” for Euro 14 per month that is automatically debited.
  • 50% of this amount goes to the Foundation every month.
  • you play in “de Vriendenloterij” and you have a chance to win the prizes that fall every month.
  • you can cancel your subscription whenever you want.

September 26th, 2019

A few weeks ago I was driving along the highway with Fenn and saw a company FOX ….

That is how the idea arose to write to companies with the wording ‘FOX’ in their name and to point them out to FoxP1 syndrome. We contacted dozens of companies via email to ask if they could do anything for us.

For example: – A donation box in their central hall or 1 euro of the Christmas bonus for our Foundation for each staff member etc.

We are curious about the responses and will of course share them with you as soon as possible.

July 3rd 2019

We are really proud to announce that we have found two voluntary funding employees to help us with fund raising: Caroline Valk-Meester and Sylvia Bos … thanks for joining us!

June 23rd, 2019

….. one week ago, I returned from New York …. it took me while to process all that I had heard and seen. What a wonderful few days! What a wonderful people and all these adorable Fox kids!
Learned so much form all the other parents and it was so hopeful to see the older Fox kids succeeding in their lives. The research that the Seaver Institute is already conducting is so extremely valuable.
And how amazing would it be if we could connect this wonderful Seaver Institute to the LUMC and our Research project. We will do our utmost to make this succeed!!

June 12th, 2019

On my way to NewYork. To attend the first ever worldwide FoxP1 conference. To learn more from other parents about this rare genetic disorder and to see if we can go international with our Foundation Child Well (Stichting Kind Beter).