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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FOXP1 Family Gathering and Conference All of the guest speaker presentation videos are now out on our website, along with the poster boards, pictures, and poolside conversation. If you had asked a question on the chat and it wasn't answered, or if you have additional questions since the conference or watching the videos, please send them to info@foxp1.org and we can see about getting the answers to you via future newsletters/social media. |
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IT'S NOT TOO LATE TO JOIN US - FOXP1 RACE FOR AWARENESS!! This is a virtual event, where everyone will race in their local town, at the time of their choice, between Friday August 11 - Sunday August 13, 2023. We will come together to raise awareness for our loved ones with FOXP1 Syndrome and to help support research and any future FOXP1 Family Gatherings/Conferences. What you have to do: ~ Sign Up individually or form a team with your family and friends ~ Sign Up online (Link below) ~ Run Walk or Roll any time between Friday Aug 11 - Sunday Aug 13 ~ Submit your results online. This a tremendous opportunity to raise money and awareness for our community, so spread the word and get together with your family, friends, neighbors to walk/run/roll to help support our Foxes. | | |
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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, August 19 at 4:00pm EDT. Please join us! | | |
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EXCITING NEWS!! Happy to announce that two key online rare-disease databases, GARD and OrphaNet, have been responsive to input from the FOXP1 community - each database will now specifically reference the clinician-recognized and modern term "FOXP1 Syndrome" for the syndrome our Foxies experience. Utilizing the consensus term "FOXP1 Syndrome" is super-important for families who have recently received a diagnosis of mutation or deletion in the FOXP1 gene more easily find information about FOXP1 syndrome, to understand what to expect as their family member develops and matures, and to find additional information and support. Thank you GARD and OrphaNet! The link to OrphaNet site is listed below and is currently updated with this information. GARD is expected to be updated within a month or two, and the link can be found below this article. | | |
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WELCOME NEW AMBASSADORS!
A big welcome to the new Ambassadors from Belgium, Brazil, and the United Kingdom!
This is a group of 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: Hilde from Belgium Marjoli and Danielle from Brazil Jules Matt Iryna and Anthony from the United Kingdom | | |
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RARE-X DATA COLLECTION PROGRAM RAREX has announced that the International FOXP1 Foundation currently has 144 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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