Alba Tull, philanthropist, founder of First Light Capital Group, and co-founder of Tull Family Foundation (TFF), recently made a $1 million donation through TFF to RSRT to further our efforts to develop a cure for Rett syndrome. Inspired by her friend Stephanie Bohn’s daughter who was diagnosed with Rett syndrome, Alba joined RSRT’s Board of Trustees in 2016, where her leadership, vision, and support have dramatically helped our mission for a cure. We had a chance to learn a little bit more from Alba about why she made this generous donation.
Tell us how you first heard about Rett syndrome.
My friend Stephanie Bohn’s daughter, Sadie, was born in 2014. She was a beautiful baby, born with a sparkle in her eyes, and I was so thrilled for Stephanie and her husband, Andy. When Stephanie told me Sadie had been diagnosed with Rett syndrome, I was inspired to learn more about the disorder. The more I learned, the more I realized how devastating Rett is and how many families are impacted by this lifechanging disease. I wanted to do something to help change all the lives of those living with Rett, like my friend’s daughter Sadie.
What drew you to Rett research as a cause to get behind?
I was first inspired by Sadie. Sadie opened my eyes to all the girls and women with Rett who deserve a chance at a life where they are not trapped by this terrible disorder. At just 7 years old, I think about all the joys of life that Sadie has missed out on already, and it greatly pains me. Like any little girl, Sadie has hopes and dreams, and I want to make sure she is able to live out those dreams. Despite all that she’s gone through in her young years, she is still one of the most hopeful and radiant girls I know.
Through Sadie, I’ve learned about the promising research potential for Rett. RSRT has made amazing progress so far and I am confident that RSRT has the ability to truly change lives.
What would you like to say to Sadie’s parents and all the parents and families of children with Rett?
Stephanie and Andy, and every parent of a child with Rett, have my full admiration. I’m a parent too, but not of a child with Rett. While I have not experienced it myself, and cannot fully comprehend the everyday challenges of families impacted by Rett, I know from Stephanie how difficult, frustrating, and overwhelming it can be. I want all the families who are impacted by Rett to know that I am with you all the way until we cure this.
What would you like to say to Sadie and other children and adults who have Rett?
You are remarkable. You are strong and resilient. You are beautiful. We are working hard to cure Rett, and we won’t stop until we do.
You know RSRT extremely well as a trustee. What are the organization’s greatest strengths, and what are the biggest challenges it faces?
This is an organization that is 100% dedicated to finding a cure for Rett. The passion and commitment that I’ve seen firsthand is unparalleled. The CEO and most of the board and staff are parents or grandparents of a child with Rett, so this is personal for them. The scientists and the research are top notch, and I trust that they are doing all in their power to find a cure. However, unfortunately, research can be unpredictable. And that’s why RSRT pursues a number of therapeutic strategies in parallel so we are not putting all of our eggs in one basket.
When Rett is cured, what’s the first thing you’ll do?
The first thing I’ll do when Rett is cured is wrap my arms around Sadie in a big hug. The second thing I’ll do is throw a huge celebratory party for all those impacted – those with the disease, parents, siblings, grandparents, and friends. This will be a triumph for all the children like Sadie, but this will also be a monumental time for everyone whose lives have been touched by Rett.