FOXP1 VIRTUAL RACE FOR AWARENESS - GET READY TO RACE! 

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.

Hopefully many of you have plans in place to run/walk with family and friends in your neighborhood. It's not too late to sign up! We have already raised over $30,000, which is amazing. Even if you cannot get out to run/walk, please consider donating to help our community fund our conferences and research to help our loved ones.

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! Also, be sure to take lots of pictures and share them!

You can also check out our YouTube video on how to create and register:
https://www.youtube.com/watch?v=eB8BZnubEII

COMMUNITY CHAT - GENE THERAPY

Hopefully many of you had the chance to join the community chat with Dr. Genevieve Konopka on July 25 regarding AAV Gene Therapy. If you were not able to attend, please see the link below with the recorded video of the chat. Dr. Konopka explained the FOXP1 gene therapy experiment her team is completing this year.

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:

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• 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.  

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​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, August 17 at 4:00pm 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 208 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.

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/

SIBLING SUPPORT GROUP

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

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. 
  

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.