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.

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, March 9 at 3:00pm EDT.  All are welcome, but we would like to specifically invite parents of adult foxes to join us for this discussion on health issues you would like to see addressed in research, as well to discuss what the future may look like . Please join us!

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 that you can use on your own social media.

RARE-X DATA COLLECTION PROGRAM UPDATE

The International FOXP1 Foundation currently has 173 families from 20 countries. 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/

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.

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.