MEMBER SPOTLIGHT

I am Christine and I am the Austrian IFF-Ambassador or I’d better say I am in a waiting position to be an ambassador for when other Austrian families come along, since our daughter seems to be the only diagnosed case in our country so far.

I live in the south of Austria with my partner and our daughter Olivia. She is 1.5 years old and we received the diagnosis rather soon after her birth because genetic testing was ordered due to several minor abnormalities. The diagnosis was quite a shock and the information provided by the geneticists very limited, so as you do, we looked for more info online. We immediately found the IFF-website, which had been set up about a month before Olivia got her diagnosis – just in time for us. I was so glad to find such a well organised website with up-to-date information on a condition as rare as FOXP1 syndrome. I really appreciate the research section with all the relevant academic articles. In fact, there is one literature review that I took to all new doctors‘ appointments in order to inform them what to watch out for within their specialty.

I am also very excited about the data collection program and I hope loads of families participate. We know that we will face many challenges because of Olivia's genetic condition, but try not to worry too much about the future and live in the present moment.

And for now Olivia’s medical issues are well managed and she is a happy, friendly and social little girl with loads of energy and curiosity for life. It might take her longer to achieve certain milestones, but she is very determined and is so very proud when she gets there - as are we of course. Olivia might not have a perfectly normal life, but we are very optimistic that she can have a good life- and that we can have a good life with loads of adventures as a family. We are very grateful to be part of the international FOXP1-community.    

Best wishes and happy Easter, Christine

RARE-X DATA COLLECTION PROGRAM

The data collection program has been active and several of our families have already enrolled.  Thank you to those who have taken the time to enroll and help move research forward.  As of now, the US is leading enrollment with 10 families, and the UK closely behind with 6 (as shown with the graph pictured).

If you are still unsure about why you should enroll in our data collection program, one big incentive is that having a robust database will enable the International FOXP1 Foundation to generate more interest from clinicians, researchers, and pharmaceutical developers to research, test, and develop drugs, therapies, and a FOXP1 natural history study.

If you have still not viewed the webinar explaining the program, there is a link below to the video on our foundation website, as well as the link to the enrollment form.  Let's take advantage of the opportunity this program presents to the community.

MONTHLY ZOOM CHAT

The International FOXP1 foundation hosts a monthly zoom chat on the third Saturday of every month.  They are informal chats, sometimes with speakers, and have been very helpful in sharing information and stories about our Foxes.  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, April 16 at 3:00pm EST.  The zoom chats will take a break in May for our first FOXP1 webinar (details below), and will resume in June on Saturday, June 18.

MAY FOXP1 WEBINAR

Welcome to the FOXP1 Webinar series.  Dr. Cora Taylor will present behaviour management strategies of children with developmental delays, followed by an open floor for questions from parents.  Dr Taylor holds the position of assistant professor and clinical psychologist at Geisinger Autism & Developmental Medicine, and is a member of the FOXP1 Foundation Scientific Advisory Board.   We are very pleased that Dr Taylor is able to share with us her in-depth knowledge of behaviour management strategies and techniques.  Read more about Dr Taylor on our SAB web page: https://www.foxp1.org/scientific-advisory-board.

**If you have questions about your child, please send an email with your questions to cdury@foxp1.org so that Dr. Taylor can address these specific topics in her discussion**

Please RSVP this event and include your name and email address, you will then receive an email with the zoom link.   This conversation is in English and it will be recorded and posted on our website. 

The FOXP1 Foundation will host a guest speaker webinar every second month. The next event will be Saturday July 9th at 1:00 PM EDT (NYC time) with Chardell Buchanan a registered Dietitian Nutritionist and coach.  ~ Look for and RSVP this Event!

GOOGLE SEARCH

The FOXP1 website is now part of the Google non-profit program, which means we receive free advertising. The ads now show when someone searches for FOXP1 related keywords. This means when someone searches for FOXP1, various links to our website and other FOXP1 sources will appear as ads at the top of the search results, so it will be much easier for families to find information on the web.

Note that this does not replace what is in the "organic" search from Google. That is where you see lots of research articles. The more people visit our site though, the more we will show up in the organic search. As an example, if you search for foxp1 foundation, we are the first result now in the organic search. 

NEW SOCIAL MEDIA ACCOUNTS

If you are on Twitter and/or Instagram, please look up and follow the International FOXP1 Foundation.  The Instagram page is under foxp1_intl.  The Twitter page is under FOXP1 Intl.

AFFILIATION/ASSOCIATION PARTNER!

Billy Footwear works with nonprofits to offer the ability to purchase their shoes at a discount, while also giving back to the nonprofit. They offer a 10% discount on their shoes when purchased through the link https://billyfootwear.com/?ref=foxp1, and give 5% back to our organization.

Please click on the link below to read more about it on their website.

FUNDRAISING!

You can now raise money for the International FOXP1 Foundation while shopping on Amazon.  IFF is now set up on Amazon Smile, all you have to do is use website smile.amazon.com, choose International FOXP1 Foundation as your charity, and shop as you normally would on Amazon - easy!