RARE-X DATA COLLECTION PROGRAM

We have selected RARE-X as our, the foundation’s, partner to launch the first patient-led data collection program for FOXP1 syndrome.

Basically RARE-X is a database platform for our rare disease, FOXP1 syndrome, which will gather in a structured, secure manner our data or information about our children. This ultimately will help researchers, drug developers (pharmaceutical companies) and clinicians understand the syndrome and lead to future treatments that are evidence based.

The foundation in collaboration with RARE-X will be hosting a webinar on Sunday March 13 at 1pm EST, which will explain in more detail what it is. There will be plenty of time at the end for all your questions. This webinar is now posted on the “Events” section of the foundations site, as well as under the newly added Data Collection section on the website (www.foxp1.org/data-collection). 

The webinar will be recorded and posted at a later date if you are not able to attend. Mark your calendars, and please register to attend!

This is an exciting step forward for all of us.  

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, February 19 at 3:00pm EST. Beth Denenberg will be the guest speaker. She is a genome scientist at the Children's Hospital of Philadelphia, and will be giving a short Genetics 101 overview, to be followed by free time for questions and other discussion. 

NEW WEBINAR OPPORTUNITY

The FDA’s Center for Biologics Evaluation and Research (CBER) Office of Tissues and Advanced Therapies (OTAT) is hosting a public webinar on Wednesday, March 9, 2022, from 11:00 a.m. - 12:00 p.m. ET. 

The webinar, The Critical Role of Patients in Advancing Gene Therapy Treatments for Rare Diseases, will bring together patients, caregivers, advocates, and other important stakeholders to celebrate and recognize the contributions that patients with rare diseases have made to advancements in regenerative medicine. This event follows Rare Disease Day, an international day for awareness of rare diseases.

If you are interested in attending, please see the link below to register.

RARE DISEASE DAY

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.

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!