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Down Syndrome Program News
Volume #2, Newsletter #12 August 2016
 
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Dear Friends of the Down Syndrome Program,

We hope you had a wonderful summer!  We have many exciting updates to share.  The annual Eversource Walk was a huge success.  This summer, many members of our team attended and presented at the National Down Syndrome Congress Annual Conference and the Down Syndrome Medical Interest Group Annual Symposium.  Our program continues to grow, and we are excited to welcome new team members and increased clinic sessions starting in the Fall.

Sincerely,

Dr. Nicole Baumer and Dr. David Stein
Co-Directors, Boston Children's Hospital Down Syndrome Program


JUST RELEASED - NEW BOOK ON BEHAVIOR! 

We are excited to announce that Dr. David Stein, our Co-Director, has come out with a new book called "Supporting Positive Behavior in Children and Teens with Down Syndrome."  This is a wonderful resource and is now available for purchase at Woodbine House Publishing.

"Dr. Stein's book is a gift for anyone caring for young people with Down syndrome! He presents effective methods that capitalize on the strengths of people with Down syndrome in a conversational style that is readable and engaging. His approach decreases the stress of behavior management by offering positive strategies that, ultimately, help to strengthen relationships and support skill-building for future success. Highly recommended!"

- Maria A. Stanley, MD, FAAP, Medical Director, Waisman Center, University of Wisconsin-Madison
DENTAL - THURSDAY CLINIC

We are sad to share that Dr. Harleen Kumar will be leaving Boston Children's and returning to Australia.  We wish her all the best!

As of now, there will be no dental appts offered in our Thursday clinic.  If you have an upcoming Thursday appt and want to have a dental visit set up in the Dept of Dentistry for your child on the same day please contact Angela so she can do her best to set this up! 

MDSC/ DS PROGRAM SUPPORT GROUP!  Sept 10th 10am-12pm

BRUNCH AND CONVERSATION ON MEDICAL COPING!
WALTHAM CHILDREN'S LOCATION   RSVP to Jeanne Doherty

Our guest speaker will be Dr. Carolyn Snell, a pediatric psychologist working in the Medical Coping Clinic at Boston Children’s Hospital.  Dr. Snell will be providing an overview of effective approaches to helping children undergoing medical procedures, such as blood draws, sleep studies or surgery. She will discuss how these approaches can be adapted to youth with Down syndrome. We will discuss ways in which parents can best support their children through practice and strategies.

Dr. Snell works closely with our team, and is happy to see children with Down syndrome who are struggling with medical procedures.  Please contact a member of our team for more information or if you would like to schedule an appointment.


NEW PROVIDERS/CLINIC SESSIONS IN DS PROGRAM!

Please welcome Dr. Marie Reilly who is joining our provider team.  Dr. Reilly is a Developmental Behavioral Pediatrician and was a previous fellow in our program.

Sherry Tsai, our wonderful Nurse Practitioner, will be joining our Thursday provider team in the multidisciplinary clinic. 

Our Down Syndrome Program visits are available three days per week:

Tuesday afternoons:  Dr. Baumer
Wednesday afternoons: Dr. Baumer, Dr. Davidson, Sherry Tsai, Dr. Reilly, and fellows in developmetal behavioral pediatrics and neurodevelopmental disabilities. 
Thursday mornings: Dr. Davidson, Sherry Tsai.

CLINICAL TRIAL UPDATE

As you may know, the clinical trial for children with Down syndrome, sponsored by Roche Pharmaceuticals has ended. This trial was the last in a series of trials conducted by Roche Pharmaceuticals nationally and internationally in several different age groups. The pediatric study that Boston Children’s Hospital was participating in has ended because the study drug did not show an effect on learning and memory. The data from the previous adolescent and adult trials showed no differences in learning and memory in those who were taking the study medication compared to those who were taking a placebo or no medication. There were no safety concerns found in any of the trials.

Although we are disappointed that this trial has ended, we are looking forward to new research opportunities. We will continue to participate in new projects in the future, with the goal of improving the lives of individuals with Down syndrome and their families.

Sincerely,

Nicole Baumer, MD, MEd
Principal Investigator

Thanks for all your support and donations for the Eversource Walk!

What a great day we had along the Charles River while we raised money for our DS Program!  We are so thankful for staff, families and friends who came out in support of the Boston Children's Hospital Down Syndrome Program!  We had another amazing year which created the need for TWO team pictures! 

We were so excited and honored that one of our team members was the highest individual fundraiser for Boston Children's Hospital, raising over $70,000, and celebrated by throwing the first pitch at the Red Sox game! Go TEAM DOWN SYNDROME!!

It's never too late to help!  We have a donation page for anyone who is still interested in making a contribution to the Boston Children's Hospital Down Syndrome Program! 






 
CLINIC APPOINTMENTS!

Is your child due for their annual clinic visit?  Appointments this Fall/Winter are filling up quickly!  We customize each child's visit. Reach out and let us know what we can do to help plan your appointments.  Our Down Syndrome Program providers are seeing patients on Tuesday and Wednesday afternoons, and our interdisciplinary baby/toddler clinic is on Thursday mornings.

More information about our clinics is available on our website.


Please contact Angela to discuss your needs and set up an appointment!
FYI re: REMINDERS, TEXTS, AUTOMATED MESSAGES!

Our Program Coordinator, Angela Lombardo manages all of the appointments for our program.  She will provide you with the times and dates. There has been some confusion over the automatic messages, texts, and emails families are receiving from the hospital. We are working on fixing this.  In the meantime, please contact Angela if there are any questions or concerns about your appointment information, or if you need to make changes to your appointment time!  The sooner you know of a change in plans, the better so we can accommodate other families in need. 
Our Vision

All individuals with Down syndrome are physically and emotionally healthy, engaged at their highest capacity in school or vocation, have meaningful family and social relationships, and are valued members of their communities.

Our Mission

To partner with families, interdisciplinary providers, and researchers to evaluate, treat, and investigate medical, cognitive, neurodevelopmental, educational, mental health, behavioral and social needs of individuals with Down syndrome from the time of diagnosis until transition to adult care.