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Down Syndrome Program News
Volume #2, Newsletter #11 March 2016
 
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Dear Friends of the Down Syndrome Program,

We are excited for the start of spring. There are many exciting developments!  Our team members will be presenting locally in Massachusetts.  Also, several of our team members were accepted to present at the National Down Syndrome Congress in Orlando, Florida in July. 
We look forward to seeing many of you at these exciting events and in our clinic! 

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


INTRODUCING MIA GROSSMAN! 


We are excited to introduce a new team member!  Mia Grossman has joined our Thursday team in our Infant/Toddler Clinic.  Mia is a graduate of Syracuse University and Emerson College. She completed two internships here at Boston Children’s Hospital in both the Speech and Language Department and Feeding and Swallowing Program during graduate school, and joined the staff in the Department of Otolaryngology and Communication Enhancement following graduation. She has previous experience working in Early Intervention at a program for children with hearing loss. She is excited to be joining the Down Syndrome Program!

DR. STEIN ELECTED TO BOARD OF DIRECTORS OF DSMIG-USA!

Congratulations to Dr David Stein for his new position on the Board of Directors for the Down Syndrome Medical Interest Group USA.  DSMIG-USA members are professionals from a variety of disciplines who provide care to individuals with Down syndrome and/or their families. This may include physicians, scientists, psychologists, nurses, genetic counselors, educators, therapists and related health professionals.  Participation in DSMIG-USA fosters professional growth through the dissemination of information about evidence-based practice, and shared common experiences that inform best practices in the care of individuals with Down syndrome.
Our DS Program team members have been members of DSMIG - USA for many years and we are very excited for Dr Stein's new role in this group.
 
C
FEDERATION FOR CHILDREN WITH SPECIAL NEEDS - March 5th
Visions of Community 2016 Conference in Boston Seaport World Trade Center.

The FCSN conference is always a great place to learn lots of information!  Our team members will be busy at this event!  

Dr Nicole Baumer will be participating in the discussion of "Improving Care Integration for Children and Youth with Special Health Care Needs" and she is giving a presentation on "Behavioral Management in Developmental Disabiltiies: A Guide to Understanding and Managing Challenging Behaviors".

Angela Lombardo will be on a panel with Dr Jason Fogler, PhD, Staff Psychologist at Boston Children's Developmental Medicine Center.  They will be doing an interactive discussion on "When Do I Tell My Child His/Her Diagnosis?"

MDSC ANNUAL CONFERENCE - March 19

DCU Center, Worcester, MA

Will you be attending the MDSC Annual Conference?  The Down Syndrome Program will have a strong presence as always. You can find our team members there:

1.  Visit our Boston Children's Hospital Down Syndrome Program Booth
2.  Our Program Coordinator, Angela Lombardo will be co-facilitating the New Parent Workshop
3.  Allysa Orinstein, PhD, Post-Doctoral Fellow in Pediatric Psychology at Boston Children's Hospital will be presenting on "Neuropsychological Testing for Children with DS"
4.  Our Co-Director, Nicole Baumer, MD, MEd, will be presenting on the "Meet the Researchers" panel
 
DREAMING OF SUMMER?  WALK FOR BOSTON CHILDREN'S HOSPITAL DOWN SYNDROME PROGRAM ON JUNE 12!

It's that time of year!  We are thrilled to start sharing information about the Eversource Walk for Boston Children's!  Our " TEAM DOWN SYNDROME" was just registered and is ready for folks to start signing up!

The Walk will be returning to the gorgeous Boston Hatch Shell this year!  Sign up to join us!  All funds raised by TEAM DOWN SYNDROME members go directly to the DS Program Fund for programming to help benefit our patients and families!


 
A RIDE TO BENEFIT THE BOSTON CHILDREN'S HOSPITAL DOWN SYNDROME PROGRAM ON
APRIL 30th!

Any Bikers Out There??  We are so excited to have a family do a RUN for our DS Program to help with fundraising!!!

Alright guys, saddle up...this one's for Allie!  We are starting a Run to benefit Boston Children's Hospital, Down Syndrome Clinical Program. Registration starts at 8:00 stands are up at 11:00. $20 a rider/ driver $10 a passenger.  Blessing of the Bikes and Rods upon start up. We're riding from the Randolph Elks to the Quincy Elks. Route will take us through the Blue Hills and along the coast. Raffles and door prizes. Tell anyone you know who has two wheels or a really cool ride, this is a combination motorcycle hot rod run. Tell anyone you know in general, all are welcome to the BBQ at the Quincy Elks at the end of the Run. Start 'em up.

For more info:  Call 617-913-3174 or email Carroll.
Facebook Event Page
 
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. 
CLINIC APPOINTMENTS!

Is your child due for their annual clinic visit?  Appointments this Spring/Summer
 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!
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.