Welcome to the International FOXP1 Foundation's monthly newsletter. We hope this will provide you with pertinent and vital information relative to our Fox families, along with getting to know more about our Foundation, our families, and even learn how you can possibly help. |
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STUDY OPPORTUNITY Dr. Shari Lipner is a dermatologist at Weill Cornell Medicine conducting a 20-minute survey study on the skin/hair/nail manifestations of FOXP1 syndrome. In particular, this study aims to assess whether body-focused repetitive behaviors are more common in patients with FOXP1 syndrome. This study has been approved by the Weill Cornell Medicine Institutional Review Board. We encourage all parents to take this survey, regardless of whether or not your child currently has any skin/hair/nail issues. Participants will also have the option to upload photographs of any skin/hair/nail lesions if interested. If you previously took our paper survey at the FOXP1 conference but would like to upload supplemental photographs, you may do so through this survey. If you would like to participate, please do so at this link: https://weillcornell.az1.qualtrics.com/jfe/form/SV_6yEY7La1f7boTNY If you have any questions regarding the study, you may contact study investigators at any time (contact information on first page of survey). |
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THANK YOU!!! A HUGE thank you to all those who participated in and donated to the second annual FOXP1 Race for Awareness. Because of your generosity, our community exceeded the goal of $15,000 and raised $15,850, which will help support research and any future FOXP1 Family Gatherings/Conferences. What an amazing accomplishment for us all! Start thinking about getting a team together for next year! Pictures from Fox families are posted below. |
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FAMILY CONFERENCE 2023 SURVEY We would love for all of the families who attended the Family Conference on Long Island, NY in June to please take 5 minutes and complete the survey linked below. We also invite all families to complete the last 2 questions, as we would like to know if you are thinking of attending the 2025 Family Conference in The Netherlands, and if you would like to volunteer to help the International FOXP1 Foundation grow and develop.
https://docs.google.com/forms/d/e/1FAIpQLSevJp7_jTphTG4sTSrrqHCfAb2E2x1Y9vX-cBhDzz-vgyRMEg/viewform?usp=sf_link
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STUDY REQUEST The Seaver Autism Center is currently looking to add another participant to their study below, ideally in the 25-30yr old range. Please see below for contact information. |
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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, September 16 at 4:00pm EDT. Please join us! | | |
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WELCOME NEW AMBASSADOR!
A big welcome to the new Ambassador from Israel, Roberta di Neris who is establishing a community with all the fox families in Israel.
We now have ambassadors from 14 countries - these are parent volunteers who are prepared to help other parents in their country find services and support for their FOXP1 child, while helping to build a local network of families.
Please go to the Ambassador's page to contact any of our ambassadors from Australia, Austria, Belgium, Brazil, Canada, Ireland, Israel, France, Germany, Spain, Switzerland, The Netherlands, United Kingdom, and United States. | | |
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RARE-X DATA COLLECTION PROGRAM RAREX has announced that the International FOXP1 Foundation currently has 148 families enrolled in the data collection program ~ ours is now among the largest populations at RARE-X ~ congratulations to us all!! Because of this success, we will have an opportunity to compete for several substantial grants that will be used for research; our goals now are to get more enrollment and to get those who are already enrolled to upload their genetic report. This is an important opportunity to push FOXP1 research forward through our grassroots RARE-X participation, so please do participate! Follow the link below.
If you have enrolled and not already uploaded your genetic report, we are asking you to upload the genetic report as soon as possible, as well as be sure to fill out any surveys you may have received. Thank you for your attention and consideration!
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NEW STUDY! Project WellCAST is back and recruiting rare disorder caregivers! This NIH-funded research study aims to understand how to best support caregivers of children with rare neurogenetic conditions via telehealth. Eligible participants may receive free resources, evidence-based treatments by trained therapists, and/or peer-to-peer coaching by other rare disorder caregivers. Participants are asked to complete forms and questionnaires about their experiences and are compensated up to $100 for their time. Please note: Because this is a research study, participants do not select which type of support they will receive. All resources are evidence-based and accessible from home, without any travel. Participants may stop the study at any time without penalty. This is a research study funded by the National Institutes of Health and approved by the Purdue University Institutional Review Board. Learn more by emailing us at: wellcast@purdue.edu. For more information, you can visit us at the link below.
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