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.
19 oktober 2024
Registration is open for the FOXP1 conference in IJmuiden. For more info:
https://www.foxp1.org/conference-2025
02 november 2023
What a day… Researchers and families came together on November 2nd in Amsterdam at the UVA to get to know each other and learn more about FOXP1 syndrome.
05 September 2023
26 June 2023
FoxP1 International Conference in New York 21-23 June 2023
02 June 2023
29 May 2023
Actions like this always make us so happy! Not only because it generates money for FoxP1 research, but especially because we feel so connected to each other! Go Bas! You are a hero!
Gofundme.com/f/stappen-voor-flappen
01 October 2022
Again we have received a very nice amount for our research. Thanks to drs. Th.H.J. Gijsbers Foundation for your enormous contribution!!!
We have now also received almost the entire amount for the in-depth part of the research in the second year.
01 June 2022
The second year has finally started. The minimum amount and already a part of the in-depth study of our research has been realized! SUPER PROUD!
Thanks to a very nice donation from the Yske Walther fund of Ars Donandi, we have already achieved this goal! Thank you very much!!!
Now the last stretch for the last bit of budget…. we will continue unabated!
15 May 2022
FoxP1 NL day 15May2022
What a great day! So many similarities!!! Thank you everyone for attending, sharing your stories and all the enthusiasm! On to the next….
27 April 2022
Fortunately, fundraising is still going very well, but to make sure that we can definitely continue in the second year, we looked at the minimum budget necessary together with the LUMC. We have therefore divided the budget for the second year into two parts.
part 1 of year 2 – MUST have – Within this we can study the brain organoids with microscopy techniques. We will look at differences in the numbers and localization of the different cell types between the control organoids and the organoids with a FoxP1 defect. With the base editing, we’re going to see if the FoxP1 organoids start to resemble the control organoids a bit more.
part 2 of year 2 – In-depth research – with the extra money we have the manpower and budget to use single cell sequencing to map the gene expression differences per cell between the different organoids in a very accurate way. This way we can not only look at the quantity and localization of the different cell types, but we can also look at the underlying cellular mechanism.
19 November 2021
In 2019, the Vaillant Fund was the first fund that believed in our research and saw enough reason to award us a wonderful amount. Now that the first year has started and we submitted another application to them for the 2nd research year, we have once again received a wonderful amount! Grateful that we are not alone in our hope for a solution to FoxP1 syndrome. Thank you board and members of the Vaillant Fund!
26 September 2021
Participate in the research of dr. Saskia Koene of the LUMC. Read the announcement!
23 September 2021
A first “DAY OF LEARNING” organized by the Seaver Institute in New York. Great to hear how much research is already being done on FoxP1 syndrome, its symptoms, how the brain works, its short and long term effects. Very interesting to be a part of. Grateful that so many scientists are willing and able to research this rare disease and great to be involved as parents.
14 May 2021
The research project in collaboration with Willeke van Roon-Mom of the LUMC is about to start! We have gathered the finances for the 1st year with Stichting Kind Beter and we will start on 1 June 2021.
We are so incredibly grateful to everyone who helped and contributed! All friends, family, FOXP1 parents, the LUMC, donors, volunteers… The list is so long. But in this way a very big THANK YOU!
Our research, focusing on the genetic side of the FOXP1 syndrome, will last two years and will be carried out by Dr. Elena Daoutsali, under supervision of. Dr. van Roon, in the human genetics department of the LUMC.
Of course we will continue to raise funds for the 2nd year, but we are extremely proud that we have already come this far! The Bontius Foundation has promised to help us with this, so we are convinced that we will receive our final goal.
A second project has also been started under the leadership of Saskia Koene, aimed at mapping the development of children with FOXP1 syndrome. An extensive questionnaire is currently being developed in collaboration with America and Australia.
This milestone naturally requires a photo opportunity. From left to right; Fenn, Esther, Dr. van Roon, Dr. Koene, Pippa and Annemiek.
10 April 2021
Far too long ago that we actively posted for our Kind Beter Foundation. During the 2nd lock-down we also had quite a few challenges with the home education of our Fenn … but we did it again and luckily he is now back at school and peace has returned a bit. We have been busy behind the scenes and a lot of great things have happened. A small list:
- There is now a clinical geneticist in training (dr. Saskia Koene) at the LUMC, who is in the process of graduating. She has chosen FoxP1 syndrome as her subject. Amazing news! She is currently working in collaboration with the USA and Australia to set up a study with a questionnaire that should be ready by the end of the year. The more research, the more awareness, the more our Fox children will benefit from it. To be continued….
- In recent months we have also written to various funds and have received several nice donations there. Thanks to the vanDam-vanOs Foundation and the VanKampen Wassenaar Foundation for their generous donations. We have now received almost 40% of the required budget. Very grateful!
- We will use the time to come to think about and discuss how we can continue raising funds. This too will be continued …
28 February 2021
Great promotion on Rare Disease Day by Bas Ottens (father of Dorian). Listen to the interview below (in Dutch).
24 October 2020
Message from Tom Wessling (father of Pippa) That’s it! 25 days, 498 kilometers further. 1.45 pm I walked my last 300 meters towards the parking lot of Fort Sint Pieter, my very last steps with my 11 kilo backpack on my back. And there was the moment, in the distance I saw my wife, kids, my parents and André, Esther and Fenn (Kind Beter). Super nice to finally see them again. Together with Sam and my father I walked the last part through the mud to the end of the Pieterpad. After I had reached the end point and we walked back towards the fort, a huge surprise awaited me. André and Esther had made a super large banner with a very nice message on it, really great. Thank you everyone for all your support and reading my travel reports. I close my laptop
22 October 2020
Only 1 more day to go and it’s done… Tom has walked almost 500 kilometers and funded Euro 25.000 for our research! Absolutely amazing! Tomorrow we will welcome him from a safe Corona distance. To be continued….
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
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!
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!!!
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 ….
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!
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).
