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, June 15 at 4:00pm EDT.  Hosts Kate Mowery and Caroline Dury will discuss the FOXP1 Race for Awareness fundraiser and have tips and information on how to participate. Please plan on attending - you can register and RSVP right on our website, under Join Us, Events. The link is also posted below.  

FOXP1 VIRTUAL RACE FOR AWARENESS! 

Our 2024 Virtual Global Race for Awareness will be held the weekend of August 9-11. Get your families and friends together and have some fun while bringing awareness to FOXP1.

Please consider joining our Zoom chat on June 15 to get more detailed ideas and information, but here is a short example of how to get started:

1.  Visit https://www.bikesignup.com/Race/Events/IN/Carmel/IFFRaceforAwareness and click register to sign up.

2.  Create a team or join an existing team to fundraise together with.  Add a personal story about why you're running.

3.  After registering, you will receive several emails, including one with the subject line "New Team Fundraiser for FOXP1 Syndrome Race for Awareness".  Share the first link in that email with your network and on social media to let your friends and family support your run!

4.  Most importantly, have fun on your run/walk raising awareness and funds to support this important cause!

COMMUNITY CHAT - GENE THERAPY

Please join us Thursday, July 25 at 8PM EDT for a zoom chat with Dr. Genevieve Konopka and members of our Board. The purpose of this chat will be to explain the gene therapy experiment of Dr. Konopka's which our foundation is funding. It will be very informative and you won't want to miss. Please sign up at the link below, or go to our webpage or Facebook page to find the link. See you there!

RARE-X DATA COLLECTION PROGRAM UPDATE

The International FOXP1 Foundation currently has 207 families from 21 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. If you missed the emails, you can log into your account to check if there are any available. There were a few that were recently sent out, including one regarding the Burden of Illness. For updated results on what has been collected regarding the Burden of Illness survey, please see the graph below.

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/

BURDEN OF ILLNESS SURVEY FROM RARE-X

This graph shows the data that has currently been collected so far from this survey. The information gathered from this shows researchers what symptoms are most impacting our community and where the focus should fall, whether it be in regards to support or what can be measured in a future clinical trial. That is why it is so important for everyone to fill out these surveys so an accurate measure of our needs can be assessed.

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 for birthdays, anniversaries, or just because. 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.