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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TO OUR FOXP1 FAMILIES IN ISRAEL As many families are caught in the midst of the war in Israel, we know of seven families with a fox child. Their parents are working hard to manage the anxiety and keep everyone safe. Please keep them in your thoughts as they are dealing with tremendous uncertainty amidst this crisis. Our community supports you all. |
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EXCITING NEWS IN THE PUBLISHING WORLD FOXP1 Syndrome now officially appears in the Europe PMC repository. This is a significant step towards becoming an officially recognized syndrome and brings us closer to an official International Classification of Disease (ICD) code. You may be asking what is "Europe PMC" ~ Europe PMC is a global, free database of life science publications and preprints. ~ PMC provides openly available peer-reviewed scientific research. PMC does not include any non peer-reviewed research articles. How can this help us support our fox child? ~ the link and information should be shared with all clinical practitioners to help them understand and treat your child with FOXP1 syndrome. We would like to graciously thank the following researchers which includes two International FOXP1 Foundation Scientific Advisory Board Members, Drs. Rappold and Kostic. Authors: Gudrun Rappold, PhD, Ana Kostic, PhD, Alexander Kolevzon, MD,Paige Siper, PhD, Ruth Braden, PhD, Angela Morgan, PhD, Saskia Koene, MD, PhD. Thank you all for your hard work and dedication!! | | |
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FOXP1 DOCUMENTARY NEWS As some of you may already be aware, one of our own amazing parents, Claudia Parker, has created a documentary, Rarely Have You Seen a Fox Like This, sharing the story of their daughter Rhonda-Rene to bring awareness of FOXP1 syndrome to the world. She has submitted the film to six film festivals on the circuit and is awaiting word still on several of them. The process will likely take until the end of the year, and until it has made the rounds, it cannot be made public at this time. Once the festival have concluded, she will be able to share it with our community. In the meantime, please take a moment to read this article published in a Chicago news channel. We wish you great success on the festival circuit and cannot wait to see the final product! | | |
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STUDY OPPORTUNITY ***Please note that this online survey will close Friday, October 20. If you have not already submitted your response and are interested in doing so, please do so through the link below before October 20. Thank you 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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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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ASK THE EXPERT Our new monthly addition to the newsletter, an Ask the Expert Q&A. Question: What are the differences between cross-sectional and longitudinal studies; how is a longitudinal study designed and what is it good for (eg, designing clinical study and its endpoints); and what are some "insight" exit ramps -- to help the community understand how often results can be collected and shared out from a longitudinal study?
Answer: (Answered by Dr. Paige Siper, Chief Psychologist at Seaver Autism Center)
Cross-sectional studies and longitudinal studies represent two different types of research design. Cross-sectional studies examine a cohort of individuals at one time point while longitudinal studies examine the same cohort across multiple time points. To date, the clinical characteristics of FOXP1 syndrome are described through cross-sectional studies, which provide a snapshot into the syndrome, including estimates of a variety of features. These initial cross-sectional studies offer important information to inform future studies. Longitudinal studies are now a critical next step to achieve larger goals including gaining a better understanding of FOXP1 syndrome trajectories and developing targeted treatments. Through an examination of individual changes over time, optimal outcome measures, also referred to as endpoints, can be identified. Longitudinal data is then used to determine appropriate clinical trial endpoints, which are necessary to assess the efficacy of a given therapy. Within other rare disease networks, longitudinal natural history studies are generally following participants annually over a given period of time (e.g., 3-5 years). Depending on the specific research question, age of enrollment can be very broad (e.g., 12 months through adulthood) or narrower to capture specific periods of development. Given that natural history studies can be brief or last decades, a data analysis plan is made ahead of time to determine various points of data analysis.
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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, October 21 at 4:00pm EDT. 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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RARE-X DATA COLLECTION PROGRAM The International FOXP1 Foundation currently has 155 families enrolled in the data collection program!! 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. 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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