MONTHLY ZOOM CHAT

The International FOXP1 foundation hosts a monthly zoom chat for friends and family of FOXP1.  They are informal chats, led by the participants, on what every topic those individuals want to talk about.  The discussions have been very helpful in sharing information and stories about our Foxes, their development and coping strategies for caretakers.  They have also provided our Foxes the opportunity to say hi to one another!  If you are interested in joining the zoom, you can register and RSVP right on our website, under Join Us, Events. The link is also posted below.  

The next zoom will be held on Saturday, January 20 at 3:00pm EDT. The first portion of the zoom will be an introduction to our newest board member, Samit Dasgupta who will be sharing what he has been working on regarding research funding and why it's so important. Please join us!

INTERNATIONAL FOXP1 FOUNDATION ANNUAL OPEN HOUSE

We would like to extend an invitation to our FOXP1 family and friends to join us for a Zoom meeting on Saturday, February 17 3:00pm EST.  Join your hosts Adam Geller and Karl Whitney for the foundation's 3rd Annual Open House. They will walk you through last year's achievements and what the board plans for the next few years. 

Our mission is to build a global community that empowers and supports families and individuals with FOXP1 syndrome by sharing knowledge, inspiring hope, and encouraging research, and raising awareness.  

Please RSVP this event and include your name and email address, you will then receive an email with the zoom link.  This conversation is in English and it will be recorded.

INTERNATIONAL RESEARCH CONFERENCE ON FOXP1 SYNDROME

The International FOXP1 Foundation has partnered with the Duke University, School of Medicine to host the first International Research Conference on FOXP1 Syndrome. It will take place July 8-9, 2024 at the Duke University School of Medicine.

This 2024 conference at Duke University will be an academic research conference tasked with the goal of bringing together doctors and researchers on FOXP1 Syndrome from the clinical, basic research, and novel therapies perspectives to encourage collaboration and accelerate the search for therapies. With that being said, we do hope to have a few families present patient perspectives at the meeting. 

More details on the conference can be found here.

To support this conference, please select "2024 Research Conference" on the FOXP1 Donate page.

RARE DISEASE DAY 2024

Rare Disease Day is the official international awareness-raising campaign for rare diseases.  It takes place on the last day of February each year, and aims to raise awareness amongst the general public and decision makers about rare diseases.

There are many things you can do to help promote Rare Disease Day, which can be found on our website at the link below. 

Please also be sure to follow our own International FOXP1 Foundation social media pages on Facebook, Instagram, and Twitter for more ideas.

RARE-X DATA COLLECTION PROGRAM UPDATE

The International FOXP1 Foundation currently has 168 families. Our goals now are to get more enrollment and to get those who are already enrolled to upload their genetic report. If you have enrolled and not already uploaded your genetic report, we are asking you to upload the genetic report as soon as possible. In addition, please watch for new surveys in the near future and be sure to fill them out.

Participation in this program can have important benefits for us and for researchers studying FOXP1 syndrome. For example, in 2023, thanks to our involvement in the RARE-X program, researchers were able to identify symptoms that are commonly reported by families in RARE-X but not represented in the literature as of mid-2023. See the graphic posted to the left. Although an excellent review published in late 2023 provides an updated, comprehensive review of FOXP1 (https://www.ncbi.nlm.nih.gov/books/NBK594825/), this data analysis nevertheless shows how our own lived experiences can improve the "official" understanding of FOXP1 syndrome. 

Again, thank you for your participation in the program; as always, the more we all participate (including with longitudinal surveys over time) the richer the dataset and more impactful the insights will be. If you have not yet registered for the RARE-X data collection program, or you have not checked your dashboard lately for new surveys to complete, please follow this link: https://foxp1.rare-x.org/

NEW AMBASSADOR UPDATE

We would like to welcome Lorenza Con II Curore as the new Spanish ambassador.  Lorenza and Elena will work together to support the fox community, currently there are 13 families connected on WhatsApp. Great news out of Spain, a new research project is starting up. If you are interested in participating please contact Lorenza or Elena at Spain@foxp1.org.  

If you would like to connect with other families in your country, check out our list of ambassadors on our web site. If your country is not listed and you would like to volunteer to help other fox families, please send an email to info@foxp1.org  

Families helping Families, building our Fox community!

https://www.foxp1.org/ambassadors

NETHERLAND RESEARCH CONFERENCE SUMMARY

November 2nd, the Dutch Kind Beter Foundation hosted a one day FOXP1 family and research conference at The University of Amsterdam (UvA). The morning started with Kind Beter Foundation opening the conference followed by and a short presentation by Job Meijer, an adult FOXP1 member who gave us an insight into his life.  

The following researchers from The Netherlands presented their ongoing research projects.  Once a study is published, more information can be provided.

Characteristics of FOXP1 syndrome - LUMC - Dr. Saskia Koene
Not only does Dr. Koene researches the medical and neurological symptoms of the FOXP1 syndrome, she also conducts research into adult FOXP1ers and their possibilities and limitations. In the new year Dr. Koene will work for Radboud University Medical Center, where she will continue her studies of FOXP1 and collaborate with the Kind Beter Foundation.

Results of initial research and the PIPA project - UVA - Dr. Annemiek Linn
How do parents use social media to share knowledge with each other, and what does it do to parents when they are confronted with other children with FOXP1 on social media? Is there a possibility to bundle that knowledge? Dr. Linn tries to answer these answers in the various studies she conducts.

Genetic research and possible solutions - LUMC - prof. Willeke van Roon
By creating Brains on a Chip with a healthy FOXP1 gene, a mutation on the FOXP1 gene and a deletion on the FOXP1 gene, we now have very valuable cell lines that can be used for testing. For example, which existing medications work well or not for certain symptoms, can we adjust the disrupted proteins, can we use new medications?

Tracing connections between FOXP (FOXP1, FOXP2, FOXP3 and FOXP4) genes and speech and language development - Prof. Dr. Simon Fisher (Radboud university medical center/Max Planck institute Nijmegen)
Prof. Dr. Simon Fisher has been researching the FOXP2 gene for a number of years and has now also been researching the other FOXP genes (and therefore also the FOXP1 gene) and how abnormalities in this group of genes influence language skills and speech.

Studying FOXP1 genetic variants using 3D brain models - Dr. Mubeen Khan (Max Planck Institute Nijmegen)
The Max Planck Institute is using brain organoids to investigate the extent to which the FOXP1 gene influences the development of the brain at an early stage.

Dissecting sleep problems in FOXP1 individuals and fruit fly models - Dr. Mireia Coll-Tane (Radboudumc)
Fruit flies have a number of genes that are the same and an almost identical sleep pattern to humans and are therefore very valuable for use in research. By examining the sleep pattern of a fruit fly with a healthy FOXP1 and a FOXP1 gene with a change, a lot can be learned about the sleep problems that frequently occur in FOXP1 patients.

The role of FOXP2 in the differentiation between magnocellular Oxt and PVN neurons - Jari Berkhout (LUMC)
A study into the role of the FOXP2 gene and its influence on the brain.

What became clear to everyone was that sharing research and knowledge with each other leads to new ideas, broadening research possibilities. To mention a few of the benefits; We can more broadly investigate how the different FOXP genes influence each other, we can also use fruit flies to see how the overstimulation works in someone with a FOXP1 change, we can use the developed cell lines to add chemicals or compounds that have an effect using AI (artificial intelligence).

André de Koning from the Kind Beter Foundation closed the day with the following statement;
“If 1 fox knocks at the door, it may not make an impression, but if 3 or 4 foxes knock, they can no longer be ignored.”

If we manage to mobilize the various institutes and researchers into FOXP1, FOXP2, FOXP3 and FOXP4, bring them together and work together even more, we can achieve much more together!

Thank you to Esther Kloosterman of the Kind Beter Foundation for this summary.

FOXP1 BRACELET SET FUNDRAISER

These beautiful bracelet sets would make a lovely Valentine's Day gift. Support the International FOXP1 Foundation with your purchase of this set. Feel free to post on your social media sites and place bulk orders. Your friends and family will be happy to support our efforts to move science forward.

Bracelet set is $35 plus shipping. 
  

AFFILIATION/ASSOCIATION PARTNER!

Billy Footwear works with nonprofits to offer the ability to purchase their shoes at a discount, while also giving back to the nonprofit. When shoes are purchased through the link https://billyfootwear.com/?ref=foxp1, Billy Footwear will give 15% back to our organization.