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Down Syndrome Program News
Volume #1, Newsletter #4 March 2015
 
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FUN FACT ABOUT OUR CLINIC

We have 16 team members in our DS Program.  We have: Doctors, Psychiatrists, Psychologist, Nutritionist, Dentist, Orthodontist, Nurse Practitioner, Patient Liaison, Program Coordinator, Speech Pathologists, Physical Therapists and an Audiologist! 

All those folks combined have 212 years of experience
working with people with Down syndrome!



NOW HIRING!

Apprenticeship Program in the DS program!  We are THRILLED about this new exciting Apprenticeship that we will be offering to a young adult with Down syndrome!

Read the job description on our site and please pass on to anyone who may be interested!

DEADLINE TO APPLY IS APRIL 1ST!


Dear Friends of the Down Syndrome Program,

We are so happy to see the sun shining (and the snow melting!) as we start spring. As usual, the Down Syndrome Program is busy and there are many exciting things on the horizon! On Saturday, some of our team members will be presenting at the Massachusetts Down Syndrome Congress in Worcester, MA. We hope to see many of you there! We have also made some great progress with research including completion of a new study about inclusion of children with Down syndrome. This month, we would also like to highlight our magnificent nurse practitioner, Sherry Tsai, PNP. Sherry came to the Down Syndrome Program three years ago and has become an integral member of our team. She brings in-depth knowledge of medical management of Down syndrome and neurodevelopment, and is also very talented in working with toileting issues. Please read on to learn more about Sherry Tsai and her wonderful work.

 

Sincerely,

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


FEATURED CLINICIAN

Sherry Tsai has been a pediatric nurse practitioner in the Developmental Medicine Center's Pain and Incontinence Program, also known as PIP, since her move to Boston 8 years ago, and with the Down Syndrome Program for nearly 3 years. She obtained her nursing and pediatric nurse practitioner training and credentials at Johns Hopkins University and an undergraduate degree in speech therapy at Colorado State University. Although she spent most of her adult life in Colorado where she and her husband raised their 2 children, they followed their children east where they attended college and ended up staying after they graduated and moved on.

Before settling in Boston, Sherry worked at several prominent medical institutions – Children’s Hospital of Philadelphia, Children’s National Medical Center, Grady Hospital, in addition to Johns Hopkins Hospital, in positions in pediatric neurology, neonatology and endocrinology. She also worked in general pediatrics and college health, and as a study coordinator for clinical pharmaceutical trials.

Currently, she finds she has the incredible good fortune to function as the medical source for the Developmental Medicine Center's ever popular 6 week Toilet School Program, provide toileting guidance for both typically developing and developmentally challenged children from 4 years through high school AND to be a part of the Down syndrome program, where she combines her continence, behavioral, medical and developmental background to address families’ concerns. At the same time, she has the added bonus of getting to know and play with some of the BEST kids and their families EVER!

When not at work, you'll find Sherry looking for a sunny spot to stay warm, walking on the beach or planning trips to play with her grandchildren!!!

Massachusetts Down Syndrome Congress - Annual Conference!  March 28th!


Read all about the  workshops!   More details about the day  here!


Our team members will have a strong presence!

Angela Lombardo- New Parents: Sharing Our Stories

Nicole T. Baumer, MD, M.Ed, and David Stein, PsyD - When it’s More than Just Down Syndrome – Neurodevelopment and Co-Occurring Conditions

Leah Cohen RN, MSN, CPNP - Toilet Trouble: A Stepwise Approach to Potty Training


Also come by and visit our Boston Children's DS Program booth!  Team members will be there throughout the day to greet and chat with families! 

There are some very interesting topics being shared so check out list!  Here are a few highlights!

Could it Be More Than Down Syndrome? Part 1 and 2: An Introduction to Ds/ASD -
Margaret Froehlke, RN, BSN, Secretary of the Board of Directors at the Down Syndrome-Autism Connection (National), Denver, Colorado; Sarah Hartway, RN, MS, President of the Board of Directors at Down Syndrome-Autism Connection (National), Denver, Colorado; Robin Zaborek, Executive Director at Down Syndrome-Autism Connection (National), Denver, Colorado  This presentation provides an introduction to DS-ASD for families and professionals who want to better understand a child in their care, and for community members who simply want to learn more. Come and learn about research findings, behavioral red flags, barriers to receiving an evaluation, and the families’ emotional journey.

Coming of Age in Massachusetts -
Geoffrey M. Misilo, Esq. Attorney for the Special Needs Practice Group of Fletcher Tilton, P.C.  Coming of age in Massachusetts will focus on the issues surrounding turning 18 in Massachusetts. Topics that will be covered include guardianship and alternatives, federal and state government benefits, person centered planning, and supplemental needs trusts.
SAVE THE DATE!  April 22!  SPECIAL NEEDS PLANNING!

MDSC and our DS program are co-hosting a Special Needs Planning Seminar! 

Date:  April 22
Time:  7:00pm
Place:  Children's Waltham location
RSVP:  mlee@mdsc.org

Join us for a free Special Needs Planning Seminar!  Please RSVP to Mychelle Lee from MDSC to hold your spot!
SAVE THE DATE!  May 8th!  Transition Planning for Young Adults with Intellectual Disabilities:  Considering the Road Ahead.

Free Seminar!  Do you have an adolescent who will be transitioning to adult care in next few years?  Would you like to hear more about topics including guardianship, insurance benefits, education and transition milestones?  Keynote Speaker will be neuropsychologist, Jennifer Turek Queally, PhD.

Date:  May 8th
Time:  10:00 - 2:00pm
Place:  Children's Waltham location
RSVP:  danielle.barnes@childrens.harvard.edu or 857-218-3923

Confused about Masshealth?  Unsure if it would help your family?  Need more info about Commonhealth and Premium Assistance Program?

Many benefits to having Masshealth....click here to read about covered services. 

Webinar:   Applying for Masshealth/Taking the Fear out of the Process

Resource:  Family to Family Health Information Center 

Helpful Information:

Masshealth/Commonhealth Premium Assistance Program Flyer
TEAM DOWN SYNDROME!!!!  JOIN US IN PERSON OR BE A VIRTUAL WALKER!

We are grateful to all of the families and friends of our program who help us fundraise! All of the activities outside of the clinic visits come from fundraising! We hope you can join us this year as a walker OR as a virtual walker! Our funds raised go towards complimentary Signing Times DVD for each new family, free informative workshops, Allen C Crocker Speaker Series, our support groups, the patient liaison position and many other things!

We would love to have you join our team!  SIGN UP TODAY!!!!
RESOURCES TO KNOW ABOUT!  It's all about play and being social this month!

MORNING TRAVELERS PLAYGROUP!!!!  Morning Travelers is a playgroup for families who have children with Down syndrome. Those with babies and young children meet monthly, alternating between Tewksbury and Belmont locations. Those with older children get together for other activities. A holiday party in North Andover in December brings them all together. Their Facebook group is private, so if you are interested in joining the group on Facebook or for playgroup, please reach out to Sharon Randall on www.facebook.com/sharonrandall or by email at sharonrandall7@gmail.com.

MDSC AIM PROGRAM!!!!  The Massachusetts Down Syndrome Congress’ AIM: Teen and Young Adult Program is for 13 to 22 year olds and their families.  They get together during the school year to have fun, meet peers, and learn new things!  Read more here!

Clinic Appointments!

Is your child due for their annual visit to our DS Clinic?  If so, please reach out to Angela to get help coordinating appointments to fit your child's needs.  We offer appointments on Tuesday and Wednesday afternoons for all ages.  We have our Infant/Toddler clinic on Thursday mornings.

THANK YOU FOR YOUR SUPPORT!


Our team would like to thank you all for your continued support!


We are so thankful to the McCarthy family and the fundraising their daughter, Taylor did for our DS program.  She raised over $1,500 for our clinic at her high school's basketball game on Down Syndrome Awareness night! 

If you want to learn more about ways you can help, please reach out to us or visit the Children's Trust page.

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.