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Dr. Paige Siper and Tess Levy conduct their research at Icahn School of Medicine at Mount Sinai in New York, New York. They are currently looking to add another participant to their study, ideally in the 25-30yr old range.
This study is open to the international community. If you would like to participated and your adult child is 25-39 years of age, please contact Tess Levy at tess.levy@mssm.edu
Dr. Saskia Koene is conducting her researcher at Leiden University Medical Centre (LUMC) in The Netherlands. She is studying the functional capacities of individuals with FOXP1 syndrome.
This study is open to the international community. If you would like to participate in this study please contact Dr. Koene at foxp1@lumc.nl
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. I cannot do it without you!
Many thanks!
Annemiek
Register Here
Dr. Ruth Braden is conducting her researcher at Murdoch Children's Research Institute in Melbourne Australia. FOXP1 Speech Tracker Study, is recording the progress of speech over a 3 years.
This study is open to the international community. If you would like to participate in this study please email speechtracker@mcri.edu.au