REGISTRATION FOR THE FOXP1 CONFERENCE 2025 NOW OPEN! 

The International FOXP1 Foundation is excited to announce that the registration for the next FOXP1 Conference in IJmuiden, The Netherlands, 19-21 June, 2025 is now open! We are preparing an excellent program, primarily for families, but also for researchers, medical professionals, and specialists involved in FOXP1. There has already been a great response in the short amount of time registration has been open! See details below on current statistics as of 08Oct. More information about the conference and how to join us on our website Conference 2025 | FOXP1 Foundation
 

De International FOXP1 Foundation is zeer trots aan te kondigen dat de registratie voor de volgende FOXP1-conferentie van 19 tot en met 21 juni 2025 in IJmuiden, Nederland geopend is. We zijn bezig met het opstellen van een uitstekend programma, voornamelijk voor gezinnen, maar ook voor onderzoekers, zorgverleners en specialisten die betrokken zijn bij FOXP1. Meer informatie op onze website website Conference 2025 | FOXP1 Foundation
 

Die International FOXP1 Foundation freut sich, bekannt geben zu können, dass die Anmeldung für die nächste FOXP1-Konferenz in IJmuiden, Niederlande, vom 19. bis 21. Juni 2025, jetzt geöffnet ist!Wir bereiten ein hervorragendes Programm vor, hauptsächlich für Familien, aber auch für Forscher, medizinisches Fachpersonal und Spezialisten, die sich mit FOXP1 beschäftigen. Weitere Informationen werden bald auf unserer Website Conference 2025 | FOXP1 Foundation
 
 

La Fondation internationale FOXP1 est heureuse d'annoncer que les inscriptions pour la prochaine conférence FOXP1 à IJmuiden, aux Pays-Bas, du 19 au 21 juin 2025 sont désormais ouvertes ! Nous préparons un excellent programme, principalement destiné aux familles, mais aussi aux chercheurs, aux professionnels de la santé et aux spécialistes impliqués dans FOXP1. Plus d'informations sur notre site Web Conference 2025 | FOXP1 Foundation

La Fundación Internacional FOXP1 se complace en anunciar que ya está abierta la inscripción para la próxima Conferencia FOXP1 en IJmuiden, Países Bajos, del 19 al 21 de junio de 2025. Estamos preparando un excelente programa, principalmente para familias, pero también para investigadores, profesionales médicos y especialistas involucrados en FOXP1. Más información en nuestro sitio web Conference 2025 | FOXP1 Foundation
 


 
 

SIBLING SUPPORT GROUP

The first Sibling Support Group chat met on Saturday, October 5th and was a great success. If you have a sibling who you think would be interested in participating, please email Susan Cardillo at scardillo@foxp1.org.

and please include the age(s) and state/country you are in. If they are unsure and/or shy about participating, they are welcome to join and just listen.
  

Robbie and Sadie have always been eager to join the FOXP1 Foundation, especially since they have a sibling and cousin with FOXP1 syndrome. Now, as newly appointed student ambassadors for the foundation, they’re taking on an important role.

They’ve organized a program for children who, like them, have family members with FOXP1 syndrome. This program will provide a space for these children to share their common struggles and experiences. Once a month, they’ll host a Zoom meeting where they’ll supervise bonding activities and lead discussions among siblings of children with FOXP1.

Robbie and Sadie both have a deep understanding of what it’s like to grow up in a FOXP1 family—Robbie is the brother of Ayla Geller, and Sadie is her cousin. Their shared experiences have given them a special connection to the challenges faced by families with children who have disabilities. They also volunteer regularly at programs like Friendship Circle, which supports children with special needs. As student ambassadors, they hope to make a meaningful difference in the lives of other siblings in FOXP1 families.

WE NEED YOUR HELP!

The Board of Directors needs your help.  We ask that all friends and families in our FOXP1 community consider volunteering in your area of expertise that will help build the capacity of the foundation.   Working collaboratively with a team of parents and friends from around the world, while helping the greater community.  

The foundation has identified the following priorities that need volunteers:

​

• Grant writing team;  Work with a team of volunteers that will identify grant opportunities, and complete the required application forms and documentation. Grants are essential to fund the research that will lead to an improved quality of life and understanding of FOXP1 syndrome.  Grants will also enable conferences for families and researches by reducing the individual costs to attend. 

• Fundraising team; Organize events that will raise awareness of FOXP1 while raising funds for the foundation. Work with a group of parents and friends to provide instructions on how to raise funds while hosting a virtual event, or a locally event for families, or selling merchandise, or any other type of fundraiser you can think of. 

• Community Outreach;  Working with the Ambassador of your country, plan local meet ups for FOXP1 families and friends.  Develop a local connection with FOXP1 families and researchers in your area.

• Research team;  Work with an energetic team of volunteers who monitor research article that are relevant to FOXP1, or develop relationships with researchers,  industry , and government,  or organize research conferences.

• Marketing/Social Media team; Volunteer to develop marketing strategies and social media posts that keep our community informed on all the areas the foundation is active, while also sharing the international rare disease community activities.  

​​

​The Executive Committee 

organizational chart listed here illustrates the teams ​required to build the capacity within the foundation.​

If you are interested in volunteering for one of the needs specified, please reach out to info@foxp1.org
 

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 individuals with FOXP1, their development and coping strategies for caretakers.  They have also provided them the opportunity to say hi to one another! If you have just recently received your child's genetic diagnosis, or you have been on this path for a long time, please join us as everyone is welcome.

The next zoom will be held on Saturday, October 19 at 3:00pm EDT.  Please plan on attending - you can register and RSVP right on our website, under Join Us, Events. The link is also posted below.  

RARE-X DATA COLLECTION PROGRAM UPDATE

The International FOXP1 Foundation currently has 221 families from 24 countries (see breakdown below)! 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. If you missed the emails, you can log into your account to check if there are any available.

Participation in this program can have important benefits for us and for researchers studying FOXP1 syndrome. When you participate in the FOXP1 Data Collection process, you will help accelerate research, therapy and drug development, as well increasing the FOXP1 knowledge base.  Rare diseases with the most families enrolled gain the most interest from researchers.
 

Again, thank you for your participation in the program. 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/

 
 United States - 104 enrolled

United Kingdom- 20 enrolled

Australia -13 enrolled

Brazil- 13 enrolled

Germany -12 enrolled

Netherlands - 10 enrolled

Italy -7 enrolled

France -6 enrolled

Canada- 6 enrolled

Spain- 5 enrolled

Denmark -4 enrolled

Switzerland-4 enrolled

Cyprus -2 enrolled

Ireland-2 enrolled

Israel-2 enrolled

Belgium-2 enrolled

Argentina - 2 enrolled

Norway -1 enrolled

Portugal-1 enrolled

Romania - 1 enrolled

Slovenia-1 enrolled

Austria-1 enrolled

South Africa - 1 enrolled

Mexico - 1 enrolled

FOXP1 BRACELET SET FUNDRAISER

Support the International FOXP1 Foundation with your purchase of this set. This beautiful set makes a great gift for birthdays, anniversaries, or just because. The holiday months are coming up quickly for many of us. 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. 
  

NEW INSTAGRAM PAGE

The International FOXP1 Foundation has a new Instagram page. Please use the QR code posted here to join us on Instagram. 
  

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.

As an added bonus to those who have yet to enroll in the RARE-X data collection program, we would like to offer a gift certificate for $5 off Billy's Footwear for the first 20 families to enroll. After you enroll, please email scardillo@foxp1.org to obtain your gift certificate.