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, May 18 at 4:00pm 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.

RESEARCH UPDATE!

An update on research supported by the International FOXP1 Foundation. On April 1, we posted our first "Request for Proposals," which we hope will attract a lot of attention to FOXP1 Syndrome from the research community. The proposals received through that program will not be funded until January 2025.

This year, we will be funding 3-4 projects working directly with scientists that already have established track records in research on FOXP1:

(1) Dr. Joseph Buxbaum, Seaver Autism Center

(2) Dr. Genevieve Konopka, UT Southwestern Medical School

(3) Dr. Gudrun Rappold, Heidelberg University

We are being very careful and deliberate in this process with external proposal review of all projects by world-leading experts on genetic disorders. The process is ongoing. Once we are further along, we will have an update with a zoom meeting (or perhaps multiple zoom meetings) to describe these projects to the community.

A fundraising update: So far the Foundation has raised $105,000 for its research fund. This roughly breaks down as $66,000 from my family and network, and $39,000 from the broader FOXP1 community. This last sum is largely made up of two very large donations from community members. In addition, we've raised about $10,500 for the research conference from my network.

Thanks to everyone for your support. I am excited about the future as we continue to push for research into FOXP1 Syndrome and the development of treatment options.

 (Reposted from Facebook by Board Member Samit Dasgupta)

FOXP1 CONNECTION TO THE OLYMPIC FLAME

Kristine Charmasson, grandmother of a child with FOXP1, will represent FOXP1 when she carries the Olympic Torch on May 13th in Sete, France.

Kristine has been the secretary of the French association since it was created in 2019. She is eager to raise awareness about FOXP1 for Paul, her grandson, and for all the individuals with FOXP1 all over the world.

"I am engaged in two associations and I am attached to Olympic values such as determination, strength, self-transcendence and courage.

These values truly represent FOXP1 patients so I am really happy to represent them when I carry the Olympic Torch", she says.

We are all very proud to see that FOXP1 will be put on

the international stage in May!

SAVE THE DATE! 

Our 2024 Virtual Global Race for Awareness will be held the weekend of August 9-11. Details will be coming shortly, including tips for how to get started, so keep on eye on social media and the newsletter.

SEAVER AUTISM CENTER NEWSLETTER 

The Seaver Autism Center at Mount Sinai mentioned FOXP1 in its latest newsletter, which is linked below.

It gives a summary on the importance of GeneReviews, but also mentions their recent study with Dr. Paige Siper on post-pubertal individuals and psychiatric and medical changes. As described by Dr. Siper, "Preliminary results are positive and suggest continued development of skills even at later ages."

RARE-X DATA COLLECTION PROGRAM UPDATE

The International FOXP1 Foundation currently has 204 families from 21 countries - we met our goal of 200 (Hooray, thank you!), let's see how much we can exceed that! 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 were a few that were just recently sent out, including one regarding the Burden of Illness. 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/

SIBLINGS

Plans for a sibling support group are in the preliminary stages. If you have a sibling who you think would be interested in participating, please email Susan Cardillo at scardillo@foxp1.org.
  

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. 
  

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.