Our 2nd Annual STXBP1 Awareness Month was a Huge Success... Because of You
Our second STXBP1 Awareness Month was so full and so successful, we felt like it deserved its own blog post recap.
To start, let’s review why the community chose September to represent STXBP1 Awareness. STXBP1 is on the 9th chromosome and September is the 9th month. It was also important to parents that Awareness month coincide with a school month so that the kid’s schools and classmates could be involved. Finally, September is the month we hold the Move to Cure events so it seemed fitting we would also celebrate all things STXBP1 at the same time.
This year, we started Awareness month with a video honoring the many heroes in our lives. From our STXBP1 children, to their families, to the researchers who are working hard to find treatments and a cure, they are all heroes to us. We know we would not have accomplished as much as we have in such a short period of time without each and every one of them. Follow our Facebook page to stay up to date on all the heroes in our community.
We continued STXBP1 Awareness month with “Did You Know” fact cards sprinkled in between researcher intros, researcher webinars, and STXBP1 community hero spotlights. The first three weeks each held two researcher webinars that reviewed and updated viewers on their work as well as answered questions from the community. If you didn’t catch them live, no worries! Closed caption recordings from each webinar can be found here.
We rounded out the month with our annual Move to Cure event with over 250 participants in more than 30 states and 4 different countries joining in. Thanks to the contribution of our community and the support of families and friends, a little over $65,000 was raised for STXBP1 awareness and research almost, but not quite, tripling what this event brought in last year. To us, this is a true testament of the love, passion, and commitment this community has to bettering the lives of all STX’ers. As a result, it only makes sense to end this incredible month again honoring some of the heroes who have made these successes possible.
“A hero is not one that never falls. He is the one that gets up, again and again, never losing sight of his dreams.”
To the many STXBP1 heroes, from our children, to their families, to the researchers, and to our community, thank you!
