STXBP1 Foundation 2020 Recap
A little more persistence, a little more effort, and what seemed hopeless failure may turn to glorious success. ~ Elbert Hubbard
Like many of you, the STXBP1 Foundation began 2020 with big dreams and lofty goals. As Covid-19 made its way into our lives, we continued to cling to those dreams and goals, not willing to let them go while knowing that realistically, they were very likely out of reach. Enter the STXBP1 community with heaps of love, passion, and determination, combined with unending persistence and effort, and you have our most successful year yet.
We started off the year with our “Unique, Special, Rare” and “I Love Someone Rare” t-shirt campaigns in preparation for Rare Disease Day in February. A total of 219 shirts were sold with $2,326 raised for the STXBP1 Foundation. Friends and family proudly sported their t-shirts on February 29th, in honor of Rare Disease Day, while STXBP1 parent, Jackie Steinberg, represented the Foundation at NIH’s Rare Disease Day Event. Along with the t-shirt sales, a matching campaign brought in another $5,000 for a total of $8,326 raised in honor of Rare Disease Day.
Also like much of the world, the STXBP1 community suffered far too many losses this year. Each STX’er is truly a valued member of our community and family and their loss is felt deeply by every one of us. We grieve with their families and want them to know their son or daughter will never be forgotten. Their memory is very much a part of what continues to motivate us in leading the charge for a cure. This year, as a way of honoring these STX’ers, we began memorial funds for the families who wanted them. In honor of Elli and Spencer, $27,500 was donated this year to further STXBP1 research. We carry them with us as we push forward.
June again brought the Million Dollar Bike Ride with Lulu’s Crew and Team STXBP1. Due to the ride being virtual this year, expectations were adjusted and the fundraising goal was set at a little less than what the team brought in last year. However, Lulu and her community again proved they should not be underestimated and raised a whopping $140,000 for STXBP1 research. The Orphan Disease Center at UPenn will be announcing grant awardees from these funds later this month.
September was a busy month for our community, as you already know if you caught our blog post recap of STXBP1 Awareness Month. We kicked off the month posting a video honoring the many heroes in our lives, including STXBP1 family, friends, researchers, and supporters. We created and distributed “Did you know” STXBP1 fact cards that could be shared on social media to promote awareness of STXBP1 disorders. The month also included 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: https://www.stxbp1disorders.org/awareness-month. 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, $67,394 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.
November is Epilepsy Awareness Month. About 85% of STXBP1 patients present with epilepsy so it is a big part of our focus within our community. Some of our parents shared their personal stories of life with epilepsy on our Stxbp1 Disorders Facebook page if you want to check them out and one of the Foundation board members wrote a blog post about life with epilepsy and living with hope. We were so pleased that the Epilepsy Foundation chose to share this blog post on their website and social media platforms. You can read it here: https://www.epilepsy.com/make-difference/power-stories/epilepsy-leading-role-living-life-hope.
In November, the board also welcomed Jackie Steinberg to fill the role of vice president. Jackie is an Infection Control Nurse at Johns Hopkins Bayview Medical Center, adding the science background and expertise needed to fill some of the gaps on the board. She has a 2-year-old with a change in the STXBP1 gene and has played a supportive role in the past with Rare Disease Day events and the Million Dollar Bike Ride. We warmly welcome her to the team!
This year for Giving Tuesday, we wanted to put the focus on the STXBP1 individuals who are impacted by our fundraising efforts. We made it more personal by spotlighting, what we think of as, STXBP1 snowflakes. Snowflakes are known for their uniqueness, beauty, and sparkle and this is how we see each of our STX’ers. Almost 100 STXBP1 individuals were spotlighted throughout the day on Tuesday, December 1st, with one of them being honored for every $180 donated. One of the board members went live periodically during the day to hang the sponsored “snowflakes” on the Christmas tree. This event was a hit for STXBP1 families and supporters alike and in all, $22,847 was raised for Giving Tuesday. And we are reminded again that although the snowflake is considered to be one of nature’s most fragile creations, just look what they can do when they stick together!
The Foundation was thrilled to receive a $5,000 matching donation from an anonymous STXBP1 family to help boost end of year giving. With the matching gift, another $20,000 was raised to further STXBP1 research. We have so much gratitude for all of our families, friends, researchers, and supporters who have gotten us to this point. To thank them as well as to update on yearly fundraising progress, we created a thank you video to the tune of “Best Wishes”, a song written and performed by Casey Baum, an STXBP1 parent and co-founder of Clara Inspired. You can find the video here on our Vimeo page: and you can find more of Casey’s music here: https://www.casey.live/. For more info on Clara Inspired, you can find it at https://www.clarainspired.org/.
As we look back at our year, as we often do in the New Year, despite the challenges and the losses, we have much to be thankful for. We started out the year with a lofty goal of raising $250,000 in 2020. Knowing it would be difficult, if not impossible to reach, we still clung to that dream with hope. And with the love, passion, and determination of the STXBP1 community, combined with unending persistence and effort, we ended 2020 with $300,000 raised! We look forward with great anticipation to the opportunities 2021 will bring to our STXBP1 families.
