THANK YOU!!! 

 A HUGE thank you to all who participated in our annual Race for Awareness weekend in August!! Because of you, we met our goal of $50,000 raised! Your generosity and hard work will help our community fund research into the FOXP1 gene and family and research conferences. A very big thank you also to Samit Dasgupta and family for providing t-shirts to race participants!

SIBLING SUPPORT GROUP

Plans for a sibling support group will be starting soon. If you have a sibling who you think would be interested in participating, please email Susan Cardillo at scardillo@foxp1.org.

and please include the age(s) and state/country you are in.
  

Robbie and Sadie have always been eager to join the FOXP1 Foundation, especially since they have a sibling and cousin with FOXP1 syndrome. Now, as newly appointed student ambassadors for the foundation, they’re taking on an important role.

They’ve organized a program for children who, like them, have family members with FOXP1 syndrome. This program will provide a space for these children to share their common struggles and experiences. Once a month, they’ll host a Zoom meeting where they’ll supervise bonding activities and lead discussions among siblings of children with FOXP1.

Robbie and Sadie both have a deep understanding of what it’s like to grow up in a FOXP1 family—Robbie is the brother of Ayla Geller, and Sadie is her cousin. Their shared experiences have given them a special connection to the challenges faced by families with children who have disabilities. They also volunteer regularly at programs like Friendship Circle, which supports children with special needs. As student ambassadors, they hope to make a meaningful difference in the lives of other siblings in FOXP1 families.

DUKE RESEARCH CONFERENCE ARTICLE

The Duke Autism Center has published an article about our research conference on FOXP1 Syndrome at Duke last month. Please take a moment to read about the many new discussions and collaborations that were initiated at the conference.

https://autismcenter.duke.edu/.../international-foxp1...

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:

​

• 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.  

​​

​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
 

MEET OUR NEW MEMBERS OF THE SCIENTIFIC ADVISORY BOARD

These 6 prestigious scientists have joined 8 fellow world renowned researchers and scientists on our Scientific Advisory Board.  Please welcome Simon Fisher, Ph.D; Sharyl Fyffe-Maricich, Ph.D; Rachel Groth, Ph.D; Exequiel Medina, Ph.D; Jozef Gecz, Ph.D; and Jennifer Klein, M.A.

You can read their bios here
Ask the Experts If you have a question you would like to put forward to our Scientific Advisory Board, please email info@foxp1.org

And as we welcome these new additions to our SAB, we would like to extend our gratitude to Evan Eichler for his service as a founding member of the Board since 2021. We are sorry to see him leave, but wish him the best in his future endeavors.

SIMONS SEARCHLIGHT QUARTERLY REPORT

We are pleased to share that Simons Searchlight has released an updated summary of FOXP1 Syndrome. There is a lot of good information, please take a moment to check it out.

https://www.simonssearchlight.org/.../what-we-study/foxp1/

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, September 21 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 210 families from 21 countries (see breakdown below)! 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/

 
 United States - 99 enrolled

United Kingdom- 19 enrolled

Australia -13 enrolled

Brazil- 12 enrolled

Germany -12 enrolled

Netherlands - 9 enrolled

Italy -7 enrolled

France -6 enrolled

Canada- 6 enrolled

Spain- 5 enrolled

Denmark -4 enrolled

Cyprus-3 enrolled

Switzerland-3 enrolled

Ireland-2 enrolled

Israel-2 enrolled

Belgium-2 enrolled

Norway -1 enrolled

Portugal-1 enrolled

Romania - 1 enrolled

Slovenia-1 enrolled

Argentina- 1 enrolled

Austria-1 enrolled

South Africa - 1 enrolled

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.

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.