FOXP1 NEWS

APRIL 2024

Welcome to the International FOXP1 Foundation's monthly newsletter.  We hope this will provide you with pertinent and vital information relative to our individuals with FOXP1, along with getting to know more about our Foundation, our families, and even learn how you can possibly help.

CALL FOR PROPOSALS!

 

 

 

The International FOXP1 Foundation is excited to announce that we are seeking grant proposals for research projects that directly address the Foundation's research mission: To accelerate the development of effective treatments for FOXP1 Syndrome. To find out more, please go to our website at the link posted below.

 

 

 

 
RFP

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 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, April 20 at 3:00pm EDT.  Join us to share your parenting questions, concerns, strategies, therapies, and developmental milestones of your child. 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.

 

 

 
Join Us

EXCITING STUDY UPDATE!

 

Have you heard the phrase body-focused repetitive behaviors? (BCRB)

It's the term used for

1)picking ones skin (excoriation disorder)

2)finger nail biting (onychophagia)

3)pulling and picking nails (onychotillomania)

4) pulling out body hair (Trichotillomania)

Are these behaviors something you've noticed in your children?

 

The FOXP1 foundation is excited to announce that a research study about

BCRB has been completed and published. This is so exciting! Just to share with you we had 70 surveys/questionnaires completed at the family conference in June and afterwards.. Thank you to all who participated.

That participation enabled this study to take place. The link to the study is posted below.

 

 

 

 
Study Link

STRATEGIC UPDATE

 

 

The International FOXP1 Foundation was created in late 2019.  Since then, we've grown incredibly as the community too has grown. Recently, the board met in person and over zoom with a facilitator for a strategy setting session. A key output from this meeting will be a concrete plan to share with the community and to guide our work in the coming years. The plan will outline our strategic vision for the next three years as we continue to build a global community that empowers and supports families and individuals with FOXP1 syndrome by sharing knowledge, inspiring hope, supporting research, and raising awareness.

 

This plan is currently being drafted now with the facilitator. The aim is for it to be finalized in early May, and then will be shared with the community shortly thereafter.

 

 

 

MEET THE SPANISH ASSOCIATION

 

 

The Spanish FOXP1 Association was officially founded last 14th February by 3 FOXP1 mothers from

Madrid, Ibiza and Barcelona: Elena (mother of Zayra, 6 years old), Carmen (mother of Lola, 12 years

old) and Lorenza (mother of Bruno, 6 years old).

 

So far, Spanish families of diagnosed children had been in contact via a Whatsapp group and a few of

the ones based in Madrid had met on some occasions to know each other in person. However, many

of the families wished they could do more for their kids and for themselves as parts of a community

who shares the joys and struggles of living with FOXP1.

 

The association was founded with the mission of providing comprehensive care, support, and

guidance to individuals affected by FOXP1 syndrome and their families. They are committed parents

seeking to raise awareness, foster research, and promote the inclusion of individuals with this

condition.

 

On March 2nd 8 of these FOXP1 Spanish families met in Madrid to celebrate the new-born Asociación

FOXP1 España, wishing it to be the first of many gatherings! Please follow them on Facebook and Instagram under the name Asociación

FOXP1 España on Facebook and @asociacionfoxp1 on Instagram. There will be a website to be shared in the near future.

 

 

 

RARE-X DATA COLLECTION PROGRAM UPDATE

 

The International FOXP1 Foundation currently has 198 families from 21 countries - we are so close to 200! 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. There was a recent survey sent out on Burden of Illness. Please take the time to fill it out as our community's participation will lead to publication.


 

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/

 
  

 
Enroll Here

NEW INSTAGRAM PAGE

 

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

FOXP1 BRACELET SET FUNDRAISER

 

Support the International FOXP1 Foundation with your purchase of this set. This beautiful set makes a great gift, don't forget Mother's Day is coming up. 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. 
  

 
Bracelet Link

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.

 
Billy Footwear
Check out my website