Dr. Brian Skotko Presenting at the MDSC 28th Annual Conference
At our 28th Annual Conference on March 17, 2012, Dr. Skotko was presented with our 2012 Allen C. Crocker Award of Excellence. He was also a presenter, and you can catch a glimpse, even in this short clip, why he is renowned as arguably the preeminent expert on Down syndrome in the world.
Following in the footsteps of Dr. Allen Crocker, his mentor and confidante, while forging his own unique path, Brian has, over the past decade, become the preeminent advocate and spokesperson about Down syndrome. He has done this by advancing all areas of public awareness, conducting illuminating research, speaking publicly on issues related to prenatal testing and medical advancements, and continuing to treat patients with Down syndrome as a clinician at Children's Hospital Boston.
In 2001, Brian co-authored an award-winning book, Common Threads: Celebrating Life with Down Syndrome. His most recent book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, co-written with Sue Levine, was likewise lauded by families and experts in the Down syndrome community.
Brian has been a key advocate in developing improved processes and systems for parents receiving the diagnosis of Down syndrome. On the federal level, he helped shape and advance the Kennedy-Brownback bill, participating in early conversations with Brownback's staff and providing data from his research showing that women given a prenatal diagnosis were universally dissatisfied with the way the news was delivered. Here in Massachusetts, Brian worked with the MDSC to craft legislation similar to Kennedy-Brownback. If enacted, it will ensure that parents receiving a prenatal diagnosis have access to up-to-date, accurate information and supports.
In his capacity as a physician at Children Hospital Boston, Brian and two collaborators spearheaded three related surveys examining family members' experience of Down syndrome. The results, published in last October's issue of the American Journal of Medical Genetics, proved once and for all that that the Down syndrome is an overwhelmingly positive experience for parents, siblings and people with Down syndrome themselves.
Coincidentally, Brian's study came out at the same time as the release of new non-invasive pre-natal tests for Trisomy 21, tests that raise a number of troubling ethical issues. Armed with his own research data, along with his extensive expertise and personal connection, Brian threw himself into the frontlines of the media storm. He helped frame the public debate in a way that always kept the interests of people with Down syndrome and their families at the center.
In all, it is estimated Brian has done more than 175 media interviews over the years for the likes of TIME Magazine, the New York Times, CNN, FOX News and the Wall Street Journal.
In addition to his work on the national and international stage, Brian, has dedicated thousands of hours over the past decade to helping individuals with Down syndrome and their families here in Massachusetts.
In 2009, he was instrumental in expanding the Down Syndrome Program at Children's Hospital from a clinic treating babies until age three to a clinic that serves patients up to 18 years old, ensuring that children with Down syndrome throughout the region have access to top-flight medical care at least until young adulthood.
For the MDSC, Brian has served on our Board of Directors for 11 years, providing his unmatched leadership, guidance and expertise. As a volunteer, he has collaborated with our Parent's First Call Program to offer expert medical advice to new parents. He has likewise donated countless hours to present at grand rounds, genetic counselor meetings and medical student trainings, in the process training over 1,000 medical providers about how to best serve their patients with Down syndrome -- all on a volunteer basis.
2012 is a very special year for the MDSC's Allen C. Crocker Award of Excellence. With Dr. Crocker's death last fall, this entire event -- our 28th Annual Conference -- is dedicated to his memory. And on this special occasion, it is infinitely apropos that the award bearing Dr. Crocker's name goes to Dr. Skotko.
Just days after Dr. Crocker's passing, Brian wrote on his blog about how much he already missed the man he called my mentor, my colleague, and, most preciously, my friend. The two shared much more than their world-class professional home at Children's Hospital Boston. Brian and Allen shared a vision for a better world for people with disabilities, and they both possessed that rare combination of the expertise, boundless energy and uncompromising will to actually make it happen.
Indeed, we could not possibly present the 2012 Allen C. Crocker Award of Excellence to anyone other than Brian Skotko.