We all know Trisomy 18 is a relentless stalker of new life, often ending lives before they even get a chance. For those that do get a chance at life, their lives can be far too brief and far too burdened by life-threatening health challenges.
As a community, we must stop this from happening to developing babies day after day, month after month, year after year. We can’t continue just to be available to help their parents’ cope with the aftermath of their babies’ lives cut short. We must face this head-on to disrupt or prevent or lessen how Trisomy 18 destroys a child’s opportunity to develop normally — and that requires us to focus squarely on changing how Trisomy 18 is understood and treated as a condition, not just as a devastating, emotional event alone. To do that, we have to work together in new and innovative ways. We can’t just work as one person, or family, or group. Most of all, impacted families, donors, and event leaders united with medical and science leaders, and policy-makers — must focus on this singular goal as a team–to make Trisomy 18 a treatable, even preventable condition for the sake of our children and future generations.
So today we’re embarking on a new endeavor together, and we’ve created a new symbol to help light the way.
Our New Logo: Light and Hope
Our new logomark—the four-pointed star—offers a new symbol of who we are and where we are going as a community in the years ahead. You’ll notice it is a bright beacon amidst the darkness of a night sky to represent that, while we may begin this journey in darkness and even despair, we don’t surrender to it. Instead, as we heal, remember, and struggle against the impacts of Trisomy 18 in our children’s’ lives, we know there is hope out there in the distance. Our community can shine a light on the darkness that surrounds Trisomy 18, where so much is unknown. In this endeavor — we are creating a new future for families and their children — a future where we vanquish Trisomy 18 and where a diagnosis of Trisomy 18 can mean life, not inevitable early death.
Our New Tagline is about Taking Action
In this new endeavor, our new tagline — Advancing Research, Empowering Families — embodies that spirit of change and reflects how one requires the other. Families’ passion is the engine that accelerates research and families are the voices demanding change. While we will always be, as our past tagline reflects, “A Community of Hope through Research, Advocacy, and Support,” our Community has grown and is poised to channel all this passion of families’ wanting change into concrete actions. We can do more than just cope with Trisomy 18 in our lives. We can face it down together, changing how Trisomy 18 is understood and treated for future generations.
Our New Direction and Focus
Today, as we share our new direction, logo, and tagline with you, we are just at the very beginnings of this shift in focus. Getting to the day where we can all say, Trisomy 18 is a now a condition with specific treatments — that will take every one of us and then some — but it is doable. Fortunately, as we begin to push off in this new direction, we are not charting unknown territory in how to achieve this goal. Every Patient Advocacy Organization focused on finding treatments or preventions for an under-researched or rare genetic condition faces these same challenges.
Over the last decade, while the Trisomy 18 Foundation’s community has been growing and maturing, so many genetics and advocacy colleagues’ have generously shared their obstacles and successes with me and moving forward we stand on their shoulders. I have seen first hand how the prognosis for terrible diagnoses long thought to be “untreatable” conditions can be transformed into treatable or even preventable syndromes, changing lives forever. All made possible because of the passion of parents and families fighting together with a singular focus to give birth to those possibilities where none existed before. Our Trisomy 18 community here is no less capable or passionate. The science is ready. Our community is ready.
We can make Trisomy 18 a treatable condition in our lifetimes. I know this in my bones.
In this new endeavor — let us focus on that Light to guide us there.
Founder and Executive Director
Trisomy 18 Foundation
P.S. We’re excited to be bringing you a revamped version of our beloved Legacy Pages and an all new website coming in the Fall! We’ll keep you updated.