All parents come wired with a sense of obligation to prepare their children for life’s typical challenges. For us, that duty came with unexpected twists when, in 2003, our third child was born with Down syndrome. We were optimistic that her life would be a happy and fulfilling one, but could not escape that, for her, the challenges would not be so typical.
That sense of obligation immediately felt more like a sense of urgency.
So, like any parents in our situation would, we undertook to do what we could. Our initial efforts in this regard turned up an array of advocacy groups dedicated to improving society’s acceptance of those with Down syndrome and facilitating access to early intervention, the classroom and the workplace. We took and continue to take full advantage of their offerings and are confident that our daughter is better off because of it.
Yet, during those initial months, we were struck by an obvious piece of the puzzle that appeared to be missing from the hits that our regular web searches generated. We eagerly sought, but could not find, a group that was singularly focused on the physiological roots of our daughter’s challenges – a support structure for families, scientists and doctors interested in unraveling Down syndrome’s complexities and finding safe, medical approaches to some of its issues, not the least of which, we learned, was the specter of early Alzheimer’s disease. Further fueling that running sense of urgency was the feeling that, perhaps, the science community did not view those with Down syndrome as a priority when it came to allocating research dollars. Needless to say, that possibility troubled us deeply.
Several months later, I fell upon a featured Wall Street Journal article: “Debating Down Syndrome Research: Families Want Work to Provide Direct Benefits to Those with the Condition.” The author reported that “[p]arents are stepping up fundraising and advocacy efforts to ensure that enough research remains focused on” understanding and treating the “cognitive, speech and memory problems associated with Down syndrome.” There it was. We found DSRTF and we wanted to help.
Before long, we were in touch with the visionaries who started DSRTF and spoke with Dr. William Mobley, one of the pioneers in the world of Down syndrome research. We were relieved to have discovered what we and so many others like us had been looking for: serious people funding serious science, all focused on uncovering safe, clinically tested ways to address the memory and learning issues associated with Down syndrome, and all devoted to ensuring that a fair share of society’s precious research dollars were dedicated to helping those with Down syndrome.
In other words, we found people who, in a very meaningful way, shared our sense of urgency.
We are now proud to be among the many families nationwide who have supported the DSRTF movement through its initial years – a period of extraordinary progress. So much has been accomplished since our daughter was born in 2003, and there is more reason than ever for hope. I am privileged to assume the Chair of DSRTF at this exciting time.
Amazingly, in September 2011, something many never thought possible happened. Roche, a world leader in pharmaceuticals and innovation in the treatment of health issues, announced the beginning of clinical trials for the first potential therapy designed to improve cognition and adaptive behavior in individuals with Down syndrome. In the meantime, media have begun to shine a light on the positive outlook associated with Down syndrome research, and more and more people are connecting with DSRTF to stay abreast of scientific advances. It is exhilarating to think about what is on the horizon.
A key ingredient to DSRTF’s mission is the support of those within the Down syndrome community. People whose lives have been touched by Down syndrome – who have reason to share that sense of urgency – are joining the DSRTF movement and helping keep momentum alive.
There are more opportunities than ever to become involved, like our annual Romp for Research, which has raised over $1,000,000 to date. In 2012, DSRTF looks forward to bringing the Romp national. Stay tuned for how you can create a family fundraising page and become a DSRTF Romper, no matter what part of the planet you call home. Every little bit helps!
There are other DSRTF events planned, and more being planned, for the year. Let us know if you would like to host an event of your own or if you have any other ideas on how to support DSRTF. We will be happy to get you started.
We surely need your help because, despite the rapid pace at which all of this has unfolded, one unavoidable truth remains: we will not reach our objectives overnight. The challenges and the need for long-term commitment remain great.
Please join the DSRTF movement and help bring us closer to our goals. Together, we will continue to work hard to grow DSRTF’s efforts.
Now is not the time to lose our collective sense of urgency.
This personal perspective on supporting Down syndrome cognition research comes from DSRTF’s Board Chair, Stephen Lazare. An edited version appeared in DSRTF’s spring 2012 newsletter. Don’t miss our periodic e-mail updates — sign up and stay informed.
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