featuring

DR. JEANNE LAWRENCE

Pioneering Researcher, Newsmaker

At our 30th Annual Conference on March 22, we are pleased to feature as a guest speaker Dr. Jeanne B. Lawrence, the cell biologist who, following the recent publication of her work on Down syndrome, has been called "one of the great scientific innovators of our time."

Dr. Lawrence, a Professor and Interim Chair of the Department of Cell and Developmental Biology at the University of Massachusetts Medical School, led her laboratory in a groundbreaking study released last summer that demonstrated an ability to silence the expression of most of the genes on the third copy of the 21st chromosome.

The study, which was published in the journal Nature, shook the Down syndrome community to the core because of the potential implications for future therapies and the ethical questions such advancements would raise. See the study in its entirety here.

Note: There are widely divergent views regarding Dr. Lawrence's research. No matter what your view, we believe that many members will benefit from hearing directly from someone who is on the cutting edge of Down syndrome research. Equally important, we know that she, too, will benefit from hearing your thoughtful, insightful feedback. Please see Executive Director Maureen Gallagher's message about the findings here.

See here for the piece put together on "silencing" Down syndrome by the TV news magazine "Chronicle."

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Grounded in the Personal

PHOTO BY JACKIE RICCIARDI FOR THE BOSTON GLOBE

Dr. Lawrence has made a point of distinguishing herself from what some might consider the stereotypical researcher with little consideration for real world impacts.

In press interviews, she has cited fond memories of a summer in college spent teaching adults with Down syndrome how to swim. Connecting with people and making a positive difference in people's lives has always been a driving motivation for her, she says.

In fact, Dr. Lawrence says, science chose her as much as she chose science. For a long time, she wanted to be a teacher, but she saw better opportunities in the sciences. When she did settle on science, she chose to be a genetic counselor so she could work directly with people. And when she accepted her first laboratory position, she cried, she says because of an overwhelming concern that she was headed down a career path without a lot of human interaction.

According to Dr. Lawrence, she has always sought to keep her research and herself grounded in the personal. Since her early days of Down syndrome research 15 years ago, she maintained connections with individuals with Down syndrome and their families and invited them to talk to her medical students.

In an article in the Boston Globe, Dr. Lawrence has distanced herself from the suggestion that future therapies should be used to "cure" Down syndrome, a particularly controversial topic.

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More About Dr. Lawrence

Dr. Jeanne Lawrence discusses her work on Down syndrome research at
Northeastern University's Profiles in Innovation Presidential Speaker Series.

Dr. Lawrence is an internationally recognized leader in chromosome regulation by non-coding RNA as well as nuclear and genome organization. Her work bridges fundamental questions in genome regulation with clinical implications of advances in epigenetics.

Most recently, her lab has uncovered unanticipated involvement of
repeat sequences in normal chromosome regulation, and has demonstrated an approach which utilizes the mechanism of X-inactivation to correct chromosomal dosage imbalance in trisomy 21 (Down syndrome) cells.

Dr. Lawrence has been honored for developing FISH (fluorescence in situ hybridization) technology to detect RNA and single copy genes and has received awards from the National Center for Human Genome Research, American Society of Cell Biology, German Society for Biochemistry, Muscular Dystrophy Association, Charles H. Hood Foundation and the John Merck Fund.

She has served on the NIH Advisory Council for Human Genome Research, numerous study sections and is a monitoring editor for the Journal of Cell Biology. Dr. Lawrence received a BA in Biology and Music from Stephens College, a MS in Human Genetics from Rutgers University and a Ph.D. in Developmental Biology from Brown University.

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...AND MUCH, MUCH MORE...

F

or the 30th year, we are proud to host our Annual Conference, bringing together more than 600 self-advocates, parents, grandparents, siblings, educators, and other professionals to learn from regional and national experts on a spectrum of topics related to Down syndrome. Our 2014 Champions Conference includes:

Awards Luncheon Extravaganza
Keynote Address by Self-Advocate John Dunleavy
Specialized Tracks for Parents, Educators, Young Adults and Brothers & Sisters

More than two dozen workshops, including:

Video Modeling - Engaging and Effective Means to Teach Children with Down Syndrome

Susan Ellis, BSAC, University of Florida

Sexuality, Social Skills and Individuals with Down Syndrome - A Rationale for Learning (2014)

Sally Fogel, M.Ed. Sexuality Educator, Counselor and Trainer

What Autism Looks Like in Persons with Down Syndrome

Susan Hepburn, Ph.D., Associate Professor, Depts. Of Psychiatry & Pediatrics,

JFK Partners, University of Colorado

Achieving a Healthy Weight through Lifestyle Change with Adolescents with Down Syndrome

Richard K. Fleming, Ph.D., Associate Professor Department of Exercise and Health Sciences, University of Massachusetts Boston

Barbara Fargnoli, MS,RD, Lifestyle Coach Health U., Eunice Kennedy Shriver Center at University of Massachusetts Medical School

Growing Up! The Ins and Outs of Transition Planning

Allie Schwartz, MD, Co-Director, MassGeneral Hospital Down Syndrome Program, Kay Seligsohn, Ph.D, Pediatric Neuropsychologist, MassGeneral Hospital Down Syndrome Program, Julie A. Grieco, PsyD, Neuropsychology Post-Doctoral Fellow, MassGeneral Hospital Down Syndrome Program

Targeting Reading Instruction to Maximize Learning in Students with Down Syndrome

David A. Koppenhaver, PhD, Reading and Special Education Dept.,

Appalachian State University

We hope you will join us on March 22nd at the DCU Center to promote acceptance and inclusion and celebrate the Down syndrome community.

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What does

A "CHAMPION" WITH DOWN SYNDROME

look like?

SHOW THE WORLD!

Send us a photo of your Champion with Down syndrome....

We will showcase the photos at our Champions conference and online.

Of course, when we say Champion, we mean it in the broadest possible sense....

Whatever your loved one does

- drawing, voting, singing, working, laughing,

cooking, or hugging (like Nat Didona, above) -

we know they do it like a champion.

Send your photos to MyChampion@mdsc.org or message us on Facebook. Include a sentence or two about your photo and please include their name, age and hometown. Images should be minimum 100KB.

DEADLINE MARCH 1