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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OUR WEBSITE HAS A NEW LOOK Please go out and take a look at our website if you have not done so recently. There have been many changes, along with several new pages. Changes include streamlining the menu items, reorganized Resource page, and links to the newsletters. Some of the new additions are a page with all of the research projects, a page under Supporting Families on Characteristics and Treatments, as well as the Ask the Expert articles that are in the newsletters. | | |
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STUDY UPDATE Dr. Shari Lipner's study of dermatological manifestations of FOXP1 syndrome has closed - we had 33 participants who filled out the survey at the family conference in June, and we had an additional 37 who participated online for a total of 70. As a reminder, this study aims to assess whether body-focused repetitive behaviors are more common in patients with FOXP1 syndrome and has been approved by the Weill Cornell Medicine Institutional Review Board. Great job to our community for its strong participation in this important study! They are currently in the data analysis stage and are expecting to publish the results in about 6 months. We will keep you updated. |
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MONTHLY ZOOM CHAT We have exciting guest speakers for both our November and December zoom chats. For November, we are honored to welcome Dr. Saskia Koene, who will present her research that focuses on the functional phenotype of FOXP1 syndrome. 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, November 18 at 3:00pm EDT (Please take note of the time change). Please join us! Also, be sure and save the date for our December monthly Zoom chat, on Saturday December 16 at 3PM EST. Dr. Cora Taylor will be joining and focused on a discussion around puberty. | | |
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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 158 families enrolled in the data collection program!! Please see a complete breakdown of numbers between the countries listed below. 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 see your country and you're not included in that number, follow the link below to get enrolled.
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!
United States: 77 United Kingdom: 15 Germany: 9 Brazil: 9 Australia: 8 Netherlands: 8 Italy: 5 France: 4 Canada: 4 Spain: 3 Switzerland: 3 Denmark: 3 Cyprus: 2 Belgium: 2 Austria: 1 Norway: 1 Portugal: 1 Romania: 1 Slovenia: 1 South Africa: 1 Total: 158
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