Wednesday, November 28, 2012

DSI Annual Holiday Party - Let's Celebrate

2012 has been a successful year for Down Syndrome Indiana and we want to celebrate with our AMAZING families! 

Please join us at our Annual Holiday Party:

Friday, December 14th, from 6pm to 10pm at The Atrium

(3143 E. Thompson Road, Indianapolis, IN 46227)

Festivities to include:

STAR Award Presentations, Delicious Dinner Buffet, Music and Dancing, Pictures with Santa Claus, Holiday Cookie Art, and a Photo Booth!

This event is provided with no cost to our families, though we do accept donations of office supplies.  US postage stamps and white copy paper are greatly appreciated.

Please RSVP to if you and your loved ones plan to attend!

Wednesday, November 14, 2012

From the Desk of the Executive Director

November is about giving thanks. I would like to take a moment to thank the Down Syndrome Indiana staff Firany Briceno, Outreach Coordinator, Jessica Hadsell, Event Coordinator and Stephanie Glowner, Member Services Coordinator for their dedication to the mission of DSI and for working tirelessly on your behalf. If you see them at an event, talk to them on the phone or trade e-mails with them, please take a moment to thank Firany, Jessica and Stephanie for all they do for the organization.

I would also like to take a moment to thank the very dedicated team of interns and volunteers that are in the Down Syndrome Indiana office on a regular basis (i.e. weekly or more often) assisting the staff members with their workload. They are:

Angie Cain
Stephanie Carlisle
Jessica Green
Sarah Harris
Robin Hill
Dominique Lewis
Marty Mason
Clarinda Patterson
Joel Persinger
Katie Shaw
Ashley Smith

A huge thank you to the staff and volunteers for the diverse array of strengths, dedication and gifts to you bring to DSI on a daily basis. I am truly grateful and proud to call you part of the DSI family.

Warmest Regards,

Lisa Wells

Lisa Wells, Executive Director

Wednesday, November 7, 2012

NIH Establishes Ds Patient Registry

A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders.

People with Down syndrome or their family members will be able to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner.

If a participant gives permission to be contacted, clinicians and researchers who are authorized to access the database will be able to contact these individuals to see if they are interested in participating in a research study.

Ultimately, the registry will be able to link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.

The contract, which will support the creation of the registry through September 2013, received $300,000 in funding for its first year.

"The new registry provides an important resource to individuals with Down syndrome and their families," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. "The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research."

Down syndrome most frequently results from an extra copy of chromosome 21 in the body’s cells. Infants with Down syndrome are likely to have certain physical characteristics, such as short stature and distinctive facial features, as well as health conditions like hearing loss, heart malformations, digestive problems, and vision disorders. Although Down syndrome most commonly results in mild to moderate intellectual disability, the condition occasionally involves severe intellectual disability. In addition, some individuals with Down syndrome age prematurely and may experience dementia, memory loss, or impaired judgment similar to that experienced by individuals with Alzheimer disease.

"Down syndrome is complex," Dr. Maddox said. "A wide array of scientific expertise is required to address all its aspects in a comprehensive manner."

Development of a patient registry was a leading recommendation in the 2007 NIH Down Syndrome Research Plan, which sets goals and objectives for the Down syndrome research field. Together with the Global Down Syndrome Foundation, the NICHD sponsored the Down syndrome National Conference on Patient Registries, Research Databases, and Biobanks to solicit the advice of a number of experts from the advocacy community, federal agencies, industry, and the clinical and research communities on how best to establish a Down syndrome registry.

The plan for the registry was supported by the public-private Down Syndrome Consortium, which was established by the NIH in 2011 to foster the exchange of information on Down syndrome research, and to implement and update the Research Plan. Membership on the Consortium includes individuals with Down syndrome and family members, representatives from prominent Down syndrome and pediatric organizations, and members of the NIH Down Syndrome Working group, an internal NIH group that coordinates NIH-supported Down syndrome research.

"We're grateful to those who provided us with the advice that allowed us to establish a national registry," Dr. Maddox said. "We are happy that this important step in furthering research on Down syndrome has been accomplished and hope that many families will take advantage of the opportunity to sign up as soon as the registry goes online."

About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; intellectual and developmental disabilities; and medical rehabilitation. For more information, visit the Institute’s website at

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit