DUKE RESEARCH CONFERENCE (posted to Facebook by Samit Dasgupta)

We had a very successful research conference on FOXP1 Syndrome over the last few days here at Duke University. Researchers from around the world presented their research and several families gave their personal perspectives. The coffee breaks and lunches were filled with researchers making new connections, discussing novel directions, and planning collaborations. Many researchers commented on the impactful and motivating presentations made by our FOXP1 parents. Several of the researchers met patients for the first time and found the connections eye-opening and inspiring.

All of the talks were exciting and described new frontiers in science, but I will focus on a few talks that might be of greatest interest to parents.

Pilar Trelles, Saskia Koene, Cora Taylor, and Miya St. John presented clinical perspectives on FOXP1 Syndrome, with Dr. St. John focusing on speech and language development.

Dr. Jay Gibson presented his joint work with Dr. Konopka on possible treatment of FOXP1 by gene replacement therapy. The FOXP1 Foundation is funding a follow-up project to further validate the approach. Recall that we have a Zoom call set up to discuss this project on July 25, where families can ask Dr. Konopka their questions about gene therapy.

Dr. Gudrun Rappold presented evidence for a possible treatment for the neurological effects of FOXP1 Syndrome. The foundation is working closely with Dr. Rappold to develop this into a reality.

Dr. Joseph Buxbaum presented on his work with Dr. Matthew Disney on the search for a drug treatment for FOXP1 Syndrome. They are still working on identifying a candidate drug. The foundation is funding Dr. Buxbaum's lab to create organoids for a future large-scale drug screen. We are hoping to have a Zoom on this project later this year.

Drs. Feng and Jiang presented on lessons learned from the search for treatments for Phelan-McDermid Syndrome and Angelman Syndrome; these conditions each have multiple treatments in clinical trials already. With further research, the same can be true for FOXP1 Syndrome in the years ahead!

You can still support our meeting by selecting "2024 Research Conference" and donating at the link below: https://www.paypal.com/donate?hosted_button_id=LPE7XN2WYFQ9W&fbclid=IwZXh0bgNhZW0CMTAAAR3-UtJ2E4A5UtB1Wmk0iHLAuZ79lOU8NPIZaykZine7IA5CT-Bq8_iF40g_aem_1SP7B6HCrfWiq9FdWZFwrQ

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.

Hopefully many of you participated in the Zoom chat on June 15 and received some great ideas of how to proceed, but if you were not able to attend here are some guidelines 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! 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

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!

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, July 20 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.  

NEW PARTNERSHIP WITH RDI

The International FOXP1 Foundation (IFF) is excited to announce we have partnered with Rare Diseases International (RDI), a globally recognized umbrella organization uniting individual rare disease advocacy groups like the IFF. Although each member organization may represent a small number of individuals and their families, together as part of RDI we can be strong on the global scale. The IFF looks forward to supporting RDI's global mission and sharing best practices and learning from other member organizations also traveling the rare disease advocacy and research roads.

https://www.rarediseasesinternational.org/

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. 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/

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.