OPEN SCIENCE DATA CHALLENGE FROM RARE-X

RAREX has announced that the International FOXP1 Foundation currently has 105 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!!

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 10 families registered - 21 adults and 15 kids. Please do consider joining us in person and sign up with the link below. 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!

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, January 21 at 3:00pm EDT.  Please join us!

GETTING AN ASSISTANCE DOG

By Timea Jansen, FOXP1 German Ambassador

Mattea is getting her assistance dog Miro in November 2023.  For over 3 years we were looking to find the right organisation, dog and to finance this expensive Project (38.000€).

Service Dogs for Children with Autism act as constant companions to children with autism to help them improve social interactions and relationships, expand verbal and nonverbal communication, teach life skills, increase interest in activities and decrease stress within the family. A dog doesn’t pass judgment, but breaks into the world of autism and becomes a crucial part of the family’s life.

​Of course, there are many more types of assistance dogs.

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In the first place, it can be thought of as an aid: just as a blind person may use the cane to move safely, the dog also serves as an aid to the owner in this case.

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Therefore, in contrast to family dogs, they may also be taken to public places that are normally off limits to dogs, such as: the supermarket, where the patient has usually a meltdown or overstimuation, etc.

Many children with autism find comfort in weighted blankets, bear hugs, or other means of pressure on the physical body. Autism Assistance Dogs can be trained a task that involves placing their body on the child’s to offer that deep pressure. This can be beneficial during the onset of a meltdown, episodes of anxiety, hurting themselves or others, overstimulation, etc.

We are really very excited of having Miro moving in our and Matteas life! He will be a great helper!

Many greetings from Germany!

Timea

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.