YOU'RE INVITED!

PLEASE COME AND CHECK US OUT

We would like to extend an invitation to our FOXP1 family and friends to join us for a Zoom meeting on Saturday, February 18 3:00-4:00pm EST.  Members of our International FOXP1 Foundation Board will be hosting a Zoom open meeting, or open house, for you to find out what we have been up to, where we are looking to go, and to also hear from you on what you would like to see.

The Board is made up of FOXP1 parents and grandparents, volunteering their time to bring information, support, and assistance to our community.  We have members in several countries, and we offer monthly zoom calls, have launched a website (www.foxp1.org), an ambassador program in eleven countries, along with hosting an upcoming Family Gathering/Conference.  There is always an opportunity for volunteers, and we would love to hear what you have to say. 

Please use the link below to register for the zoom, or go out to our website to register – and while there, check out what’s going on in our community.  Maybe most importantly is information regarding the data collection program. We now have 118 families enrolled from 20 different countries - please take the time to read more about it on our website and if you haven't already, enroll to ensure you are counted as well (DATA COLLECTION | FOXP1 Foundation). In addition to that, there is information on the latest in research, available studies, and links to register for the family zoom calls and the Family Gathering/Conference.

We look forward to seeing and talking with you on February 18th!

The next zoom will be held on Saturday, January 21 at 3:00pm EDT.  Please join us!

OPEN SCIENCE DATA CHALLENGE FROM RARE-X

RAREX has announced that the International FOXP1 Foundation currently has 120 families enrolled in the data collection program ~ ours is now among the largest populations at RARE-X ~ congratulations to us all!! 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. At the end of the challenge period, those rare disease communities with the highest enrollment will be most desirable to researchers, and the grants would be used to support those researchers' data analyses. 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, as well as fill out any surveys you may have received. If you are unsure on how to upload a genetic report, please see the video below. The deadline for uploading genetic reports is February 28, Rare Disease Day. For surveys, they must be complete by March 30 in order to compete in the challenge and be considered for grant money. Thank you for your attention and consideration!

REGISTRATION NOW OPEN - ATTENDANCE NOW AT 19 FAMILIES, PLEASE JOIN US!!

The International FOXP1 Foundation will be hosting its first in-person meet up and conference on June 21-23, 2023 in Mineola, NY (near both the JFK and LaGuardia airports). 

The Foundation's mission is to build a global community that empowers and supports families and individuals with FOXP1 syndrome by sharing knowledge, inspiring hope, encouraging research, and raising awareness - The Family Gathering and Conference 2023 will help make that a reality.

We currently have 22 families registered, with 42 adults and 32 children (includes siblings) representing three countries. Check out our website for more information on our guest speakers and scheduled events. Please do consider joining us in person and sign up with the link below. Registration will close April 10th!! As a reminder, we are in the process of fundraising for this event and will have money available for travel support for families who may have a need - please reach out to cdury@foxp1.org if assistance is needed. We hope to see you there!

WE NEED YOUR HELP!!

The Foundation needs your help to get sponsors for our Family Gathering & Conference. Please share this flyer with your family, friends, and colleagues.

RARE DISEASE DAY IS COMING UP!

Rare Disease Day is the official international awareness-raising campaign for rare diseases.  It takes place on the last day of February each year, and aims to raise awareness amongst the general public and decision makers about rare diseases.

There are many things you can do to help promote Rare Disease Day, which can be found on their website. 

Please also be sure to follow our own International FOXP1 Foundation social media pages on Facebook, Instagram, and Twitter for more ideas.

Another way to assist in the promotion of Rare Disease Day is to stress the importance of early genetic testing on those with undiagnosed developmental issues.  We all remember what it meant to finally have an answer, and helping to share the importance of genetic testing could make a difference for others as well.  There is more information on our Resources page, under Our Story, on our website (linked below), please take a look.

FUNDRAISER - GREAT GIFT IDEA!!

Support the International FOXP1 Foundation with your purchase of this beautiful bracelet set. You can post on your social media sites and place bulk orders to save on shipping. They would make great gifts - Valentine's Day is just around the corner.

The set is $35.00 USD plus shipping.

STUDY OPPORTUNITY FOR AGES 13 and OLDER

The Seaver Autism Center is studying behavioral and psychiatric features of FOXP1 syndrome in adolescence after puberty onset.

If interested, please contact Tess Levy at tess.levy@mssm.edu.

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.

AMAZONSMILE COMING TO AN END

Sadly, the AmazonSmile donation program will be ending permanently as of February 20, 2023. A big thank you to those who have donated to and supported our organization in the past through this program!!

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.