Down Syndrome Center Newsletter - Summer 2014

From the Director - Understanding Cognitive and Mental Health Problems in Young Adults with Down Syndrome

Dear parents and friends,

Dr. George Capone

There has never been a better time to participate in person-centered research on behalf of our young adults with Down syndrome! We have finally reached a turning point in our ability to define and characterize some of the perplexing questions about the cognitive and mental health problems often encountered by our young adults. Further, we have assembled a critical mass of young clinician-researchers who understand how to use sophisticated neurotechnology in conjunction with superb clinical skills to best help our families and young adults.

I am proud of our “high-tech,” “high-touch” research team who chose to explore these challenging and complex conditions. These cognitive and mental health problems are the number one contributor to reduced quality of life for our young adults and represent the most underfunded area of research and training in the field of Down syndrome/intellectual disability.

The Down Syndrome Clinic and Research Center (DSCRC) at Kennedy Krieger Institute has been at the forefront of this pursuit for more than two decades and is now poised to take it to the next level, but we can’t do this without your direct participation and financial support. You can help by participating in one of our clinical research studies or referring this information to another family. Your financial gift will help to ensure our success.

Thank you,
George T. Capone, M.D.

Sponsor the October Cycle Challenge

October Cycle ChallengeTaking this campaign on the road, Dr. Capone will be cycling the “25-mile loop” through the majestic and varied ecosystems of the Blackwater National Wildlife Refuge on Maryland’s Eastern Shore. The ride will take place in 4-5 segments, starting in September, and will conclude on Sunday, October 26, 2014. 

Take Advantage of the One-Hundred-to-One Match

In addition to the initial 25 miles, Dr. Capone will cycle one additional mile for every $100 pledged for Down syndrome research.

Read more about BNWR:

http://www.fws.gov/blackwater/aboutus.html
http://www.fws.gov/blackwater/cycling.html

Early Bird Sponsors of the October Cycle Challenge

Dr. George Capone Cycling

We have received an opening pledge of $1,000 from Elite Racing Team in Santa Barbara, CA, which is dedicated to the development of top age group and elite triathletes. Inspired by their commitment and determination to go the distance, the Capone family is matching their gift to raise the opening pledge to $2,000.

That’s 25 + 20 = 45 miles to ride!

Dr. Capone’s goal is to cycle 200+ miles, which means raising at least $20,000 in pledge support.


Support the Down Syndrome Clinic and Research Center

Your financial support is needed to help defray travel costs for families traveling to Baltimore to participate in our studies, and to hire a trained research assistant to coordinate and accompany families through the various stages of participation over two to three days.

You can help in one of several ways!

Make a financial gift

  • Become a patron by contributing $1,000 or more in two consecutive years.
  • Become an enthusiast by contributing $500-$999 at least once.
  • You are already our friend! We are happy to receive a donation any time you wish.

Support our Down Syndrome Clinic & Research Center


Current Research Initiatives at Kennedy Krieger

Research LabDepression and Sleep Disorders in Adults with Down Syndrome

Kennedy Krieger is recruiting individuals with Down syndrome ages 18-30 years with mental health concerns, such as loss of functional skills, low motivation, depressed mood, social withdrawal, and motor slowing. We are also recruiting individuals with Down syndrome without mental health concerns or functional decline.

We cannot accept individuals with aggressive, disruptive, or non-compliant behaviors. All subjects will receive a comprehensive evaluation assessing general level of function, behavior and mental health, and sleep quality, as well as body shape/proportion and dietary/nutritional status. The study will include a sleep study and collection of urine, saliva, and a morning blood sample for biochemical testing.

The goal of the study is to improve our understanding of the relationship between sleep, stress, metabolism, and mental health in persons with Down syndrome. The study requires one extended visit over a two- to three-day period, including one overnight visit, at the Johns Hopkins Clinical Research Center. There are minimal risks and no direct medical benefits for participating. You will receive medical test results that may be of interest to you or your physician. A cash incentive is offered for your participation.

We will try our best to accommodate your schedule.

For more information about this study, please contact the study coordinator Cathleen Weadon at 443-923-9140 or email at weadon@kennedykrieger.org.

Study sponsor: The Johns Hopkins Institute for Clinical & Translational Research
PI: Dr. George Capone
Protocol Number: NA_00018279

Swallow Function in Adults with Down Syndrome

Adults with Down syndrome have a higher chance of developing pneumonia as they become older. One risk factor for pneumonia can be difficulty with swallowing food or liquids. We are conducting a research study to find out if adults with Down syndrome have different characteristics of swallowing than adults without Down syndrome.

This study is a one-time visit and will last about 60 minutes. Please contact Cathleen Weadon at 443-923-9140 if you interested in hearing more about the study.

Clinical Trial for Adolescents and Adults with Down Syndrome, Ages 12-30 Years

A new clinical research study is available for individuals with Down syndrome from 12 through 30 years of age.

The purpose of this study is to learn about the safety, tolerability, and efficacy of a new drug (RG1662). This drug may improve learning, memory, and behavior in people with Down syndrome, but this cannot yet be confirmed.

This study involves taking the investigational drug twice a day by mouth for about 6 months. The whole study may take up to 10 months to complete, and you will visit Johns Hopkins about 10 times.

There is no cost to participate in this study. Subjects will be paid for reasonable travel expenses to participate.

Please call our study coordinator, Carrie Blout, MS, CGC, at 410-502-7535 for more information about this new study.

Coming Soon: Amyloid Imaging in Adults with Down Syndrome

Through a unique partnership between the Kennedy Krieger Institute DSCRC and Dr. Gwenn Smith in the Department of Psychiatry and Behavioral Sciences at Johns Hopkins University, we will be piloting a study of brain metabolic function in adults. The study will entail cognitive and behavioral testing and an MRI and PET scan of the brain to determine if amyloid protein deposition is present.

Stay tuned for more details as they become available.

In the Spotlight: Nutrition Tips from Andrea Heyman, MS, RD, LDN

It is never too early or too late to start establishing healthy eating habits for you or your child. Here are some key concepts to consider:

Balance: Eating a balanced diet means eating enough, but not too much, of any one food. A balanced diet provides you with the nutrients your body needs to stay healthy.

Moderation: Moderation is the key to eating a balanced diet. Eat smaller portions of foods high in fat, salt, sugar, or calories.

Variety: Eating a variety of foods can help you get all the nutrients your body needs. Your body needs protein, fat, and carbohydrates to perform daily functions.

  • Unsaturated fats like olive and canola oil, nuts, and fish
  • Carbohydrates from whole grains, fruits, vegetables, legumes (peas, beans, and lentils), and low-fat milk products
  • Lean protein, such as all types of fish, poultry without skin, low-fat milk products, and legumes

To schedule a nutrition evaluation, please contact the Nutrition Department at 443-923-2730.

Medical and Research Conference Update

The Down Syndrome Medical Interest Group (DSMIG-USA) Annual Meeting & Clinical Symposium was held on July 11, 2014, in conjunction with the NDSC Convention in Indianapolis, IN.

DSMIG-USA represents a group of approximately 200 medical and allied healthcare professionals providing healthcare to persons with Down syndrome. Professionals work in Down syndrome clinics at hospitals, medical centers, or community-based organizations around the United States. Since 2009, DSMIG-USA has hosted a clinical symposium to provide continuing medical education and training in the field of Down syndrome. DSMIG-USA supports the establishment of specialized clinics for persons with Down syndrome in the U.S. and internationally.

Dr. Mihee Bay, who joined the DSCRC last year, represented us at a poster session. Her presentation “Guanfacine (Tenex) Use in Children with Down Syndrome and Co-morbid Attention Deficit Hyperactivity and Disruptive Behavior Disorders: A Naturalistic Study” reports on our experience treating children with ADHD and disruptive behaviors. Study results were positive, and preparations are now underway for publication in a peer-reviewed medical journal.

Cathleen Weadon, DSCRC clinic coordinator, also attended the DSMIG-USA annual meeting as part of a gathering for Down syndrome clinic coordinators. This meeting provided an opportunity to meet, network, and share resources with other Down syndrome clinic coordinators from across the country.

International Spotlight

World Down Syndrome Day logoDid you know that every year on March 21 we celebrate World Down Syndrome Day?

Addressing an international audience from around the world, Dr. Capone was a featured speaker on March 21, 2014, at the 3rd Annual Celebration of World Down Syndrome Day, held at the United Nations in NYC. Hosted by Down Syndrome International (DSi), representatives from over 120 countries either attended in person or viewed the conference via live web stream. This year’s theme was “Health and Wellbeing – Access and Equality for All.” Dr. Capone addressed the global trend of increasing longevity for people with Down syndrome, the need for access to routine and specialized healthcare services, and person-centered clinical research. Read more.

On the Road Again! Travel Update

Dr. George Capone speaking

Improving healthcare and research opportunities for all people with Down syndrome can be an all-consuming task. Dr. Capone frequently speaks to parents, health professionals, educators, therapists, and patrons about the clinic, its research projects, and the latest findings from the DSCRC. Recent travels include:

  • Down Syndrome: Medical News and Research Priorities for Brain Function and Development, Down Syndrome Research Foundation, Vancouver, Canada, June 2014
  • International Conference for Parents and Professionals, Down Syndrome Ireland, Dublin, Ireland, November 2013
  • 3rd Iberoamerican Congress on Down Syndrome, Federacion Iberoamerican de Sindrome de Down, Monterrey, Mexico, October 2013

New DSC Appointment Policy

The health and safety of our patients is very important to us. Our new appointment policy is to ensure that our patients are attending regular check-ups and receiving the appropriate care. This is especially important for our patients on medication.

In order to continue receiving timely medication refills, it is required for you to follow up within the recommended amount of time. Prescriptions cannot be refilled if your child is not seen within the recommended follow-up time. At the end of your child’s appointment, your physician will discuss the recommended follow-up time with you. It is your responsibility to schedule and keep these appointments.

Any questions or concerns about the new policy can be directed to the DSCRC clinic coordinator, Cathleen Weadon, at 443-923-9140.

Share Your News!

We love our patients and are always inspired by all that they achieve. Does your child with Down syndrome have special news or a recent accomplishment you would like to share? If you would like to acknowledge them in our next e-newsletter, please email information to downsyndrome@kennedykrieger.org.