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

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 http://www.nichd.nih.gov/.

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 www.nih.gov.

 

 

What Students are Saying about the IUPUI S.I.T.E. Program

Down Syndrome Indiana recently checked in with the IUPUI S.I.T.E. program and talked with its staff to find out how the program is progressing. After an absolutely inspiring conversation, I would like to share with you a little bit of what I learned and why the Indiana Postsecondary Education Coalition feels making college programs available to individuals with an intellectual disability is so important…
 

 

What the Students are Saying about the IUPUI S.I.T.E. Program
 

·         “It’s Great. There’s a lot of nice, friendly people here. There’s a lot more space you can 
               walk around in.”

·         No uniforms;
 

·         Nicer students – they want to be here;
 

·         IndyGo bus trips in different parts of Indianapolis;
 

·         Taking one class;
 

·         Make lots of friends (a lot of nice people);
 

·         Learning the different bus routes;
 

·         Doing the mural project;
 

·         The library;
 

·         No fights – it’s peaceful here;
 

·         F200 Mentors.
 

What Have the Students Learned so far at IUPUI (mid October 2012)…
 

·         How to ride the IndyGo bus from home to campus and from campus to home. I am learning
            different routes too so I know how to get other places in the city – get around;
 

·         How to do PowerPoint presentations and how to put them together;
 

·         How to budget money (for lunch) so I don’t run out of money for the week;
 

·         How to put in job applications;
 

·         What to do in a job interview;
 

·         Why it is a good idea to volunteer and where I could volunteer;
 

·         How to drive my power wheelchair on the sidewalks, cross the street, get in and out of
          campus buildings, and get on and off the IndyGo bus;
 

·         How to use a cell phone to make and answer calls;
 

·         How to do my receipt sheet;
 

·         How to log in the computer and my e-mail – how to write and send an e-mail;
 

·         How to take photographs with a digital camera;
 

·         How to find my way around campus-to my bus stop, all around the Campus Center, the
           Natatorium, the IUPUI library…etc.

 

The Indiana Postsecondary Education Coalition (of which DSI is part) envisions a world in which young adults with developmental and intellectual disabilities have the option of electing postsecondary education as part of the person-centered planning as they transition from high school to the adult world.   To find out more, please visit www.thinkcollegeindiana.org.

 

Buddy Walk

SAVE THE DATE:

THE 16TH ANNUAL BUDDY WALK

WILL BE HELD ON SATURDAY, OCTOBER 12, 2013!

October is National Down Syndrome Awareness Month

Can we raise an additional $50,000 online by the end of this October, National Down Syndrome Awareness Month? I believe we can! In order to do this, we only need 200 of our 238 fundraisers to raise $250.00. Sound hard? It’s not; and here’s how we can raise the money and have a huge positive impact on Down Syndrome Indiana:

How to Raise $250 in Only Ten Days

Day 1. Make your own $25 contribution = $25

Day 2. Ask your significant other to also contribute $25 = $50

Day 3. Ask your Mom and Dad to contribute $25 = $75

Day 4. Ask your best friend to contribute $25 = $100

Day 5. Ask your boss to contribute $25 = $125

Day 6. Ask your best friend at work to contribute $25 = $150

Day 7. Ask your sister or brother to contribute $25 = $175

Day 8. Ask your in-laws to contribute $25 = $200

Day 9. Ask a neighbor to contribute $25 = $225

Day 10. Ask a businessperson you support to contribute $25 = $250


Did you know that in the 2013 budget, DSI has to double the amount of money it spends on New Parent Packets because DSI is reaching so many new families? It’s true thanks to your help!

Get Involved. Be Inspired,


Lisa Wells, Executive Director

Buddy Walk 2012

Everyone at Down Syndrome Indiana could not be more excited, and we hope that your family and friends will join us as we celebrate and promote the acceptance and inclusion of people with Down syndrome within our community!

 

We will gather, once again, in Celebration Plaza of White River State Park on Saturday, October 13^th. Registration will open at 9:00am, with the walk beginning at noon. While you are waiting for the walk to begin, please feel free to experience some the exciting activities throughout the park. There will be an enlightening Information Tent, awesome performances by Chris Burke and local artists, and exhilarating hot-air balloon rides that are sure to provide awe-inspiring views of the Buddy Walk®!

 

If you have not already assembled a team of walkers and would like to do so, please use this link to start registering yourself and team members. Should you have any issues, this short video provides a step-by-step guide in registering yourself and others.
 

For more information on this year’s walk, schedule of events, or how to get involved, please visit Down SyndromeIndiana’s Buddy Walk® website. If you have specific questions I would be happy to help any way that I can. Please direct all inquiries to buddywalk@dsindiana.org.

We are also in need of volunteers for the day. If you are interested in volunteering for the Buddy Walk®, we would be honored to have you be a part of our big day. Please contact Jessica Hadsell at 317-925-7617 or buddywalk@dsindiana.org for more information about volunteer opportunities.
 

Thank you so much for your continued dedication and support; we appreciate everything you do.
 

I look forward to seeing you all at the Buddy Walk® - let’s make 2012’s walk the biggest and best yet!
 

 

Journey to Success: Down Syndrome Through the Lifespan

Don’t miss this opportunity right here in central Indiana so please take a moment to review the conference topics and presenters that include keynote speaker Michael Remus, Dr. Mary Ciccarelli of CYACC, John Dickerson, Executive Director of the Arc of Indiana, Cindy Cobb, and Joe Meares, D.A.D.S. National just name a few!

Event: Journey to Success: Down Syndrome Through the Lifespan will occur on Sep 28, 2012 at 8:30am to 4:30pm

Location: Wyndham Indianapolis West Hotel, 2544 Executive Drive, Indianapolis, IN 46241

Description: Cost: 99 Note: additional family scholarships for registration and lodging are available. See page 11 of brochure: http://www.utsprokids.org/journeytosuccess.asp

“Journey to Success: Down Syndrome Through the Lifespan Scholarship Application Form

Two different scholarships are available for Journey to Success: Down Syndrome Through the Lifespan due to the generosity of the Russell Best Family and Consumer Investment Funding which was obtained from theGovernor's Council for People with Disabilities. One or both parents can each apply for both scholarships.

1. Conference fee scholarship: provides $75 (approximately 75%) of the $99 conference registration fee. Which comes out to a $24 conference fee after you do the math!

2. Lodging scholarship: covers the room rate and applicable taxes to stay at the host hotel on the evening of September 27, 2012. You must reside at least 50 miles from the conference site to receive the lodging scholarship.”

Value: 7 (7 instructional hours or .7 credential units)

Keynote speaker Michael Remus will share some memories and experiences that will continue to enrich his life forever. He will share his stories of getting his two sons with disabilities what they needed and yet do it with a sense of humor and with the passion that the audience has for their sons and daughters.

Contact: www.registration@utsprokids.org

More Info: www.utsprokids.org

Download a copy of the brochure here: http://www.utsprokids.org/journeytosuccess.asp