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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HAPPY HOLIDAYS Wishing all of our Fox families a happy, healthy holiday season and New Years! |
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MONTHLY ZOOM CHAT We have another exciting guest speaker for our December zoom chat. We are honored to welcome Dr. Cora Taylor, who will lead a discussion about puberty in individuals with neurodevelopment disabilities. This is an important topic for all of us, even if you're not currently dealing with it. 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, December 16 at 3:00pm EDT (Please take note of the time change). Please join us! | | |
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Mapping our knowledge about our Fox kids When our daughter Pippa was diagnosed with FOXP1, our genetics couldn't provide much insight. We received academic articles via email and were advised to join a Facebook group, which we did. It was truly impressive! Together, we've gathered valuable information about our children – a collective wisdom in research terms. As a mother researching health communication, I've learned this wisdom can offer clinical insights beyond what's in medical literature. I've sought funding to study how we can organize the data we share about our children on the FOXP1 page, which resulted in the PIPA project. Once mapped, it can efficiently inform other caregivers and physicians, guide future epidemiological analyses, and enhance treatment plans. You can contribute to advancing FOXP1 knowledge by donating your Facebook data from the Friends and Family of FoxP1 page. Is it complicated? Not at all! It'll only take 10 minutes. Is it safe? Absolutely! We ensure privacy protection through an innovative platform developed by six top Dutch universities. Your privacy is further safeguarded by informed consent and anonymized data extraction. You can also choose to withhold any uncomfortable information while donating. Click on the following link to register https://uvacommscience.eu.qualtrics.com/jfe/form/SV_8wwqpcNJKnb55zg. I cannot do it without you! Many thanks! Best wishes,
Annemiek | | |
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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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RARE-X DATA COLLECTION PROGRAM The International FOXP1 Foundation currently has 163 families enrolled in the data collection program, with 49% coming from the United States (comprised of 80 families) and the remainder from 26 other countries. 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.
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. Thank you for your attention and consideration!
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