Top Local Ds News Stories of 2015

 

Born This Way

A&E Networks announced it would be airing “Born This Way,” a new six-episode documentary series about young adults with Down syndrome. http://www.aetv.com/shows/born-this-way.

 

Erskine Green Training Institute

The Arc of Indiana, a statewide advocacy organization for people with disabilities, strives to empower people and inspire change in many ways – including expanding employment opportunities to tackle the 82% unemployment rate among people with disabilities. They not only advocate for change, they are working to be part of that change by developing the Erskine Green Training Institute through The Arc of Indiana Foundation. Find out more at: http://www.erskinegreeninstitute.org/about-us/about-the-erskine-green-training-institute/.

 

New Down syndrome Growth Charts Released

Researchers have developed and released new growth charts for children with Down syndrome. The last time the growth charts were updated was 1988. The charts can be accessed at: http://pediatrics.aappublications.org/content/136/5/e1204.

The American Academy of Pediatrics article about the release can be accessed at: http://www.aappublications.org/news/2015/10/30/GrowthCharts103015.

 

House Bill 1093

House Bill 1093 became law stating that, “When a positive result from a test for Down syndrome or any other condition diagnosed prenatally is received, a health care facility or health care provider shall provide to the expectant parent of the child diagnosed with Down syndrome or any other condition diagnosed prenatally the written information made available by the state department…”.  “This is a huge step in the right direction. I have long been concerned with the number of families that haven’t received any information about Down syndrome at all or have received outdated information.” said DSI Executive Director Lisa Wells.

 

 

“Where Hope Grows” in movie theatres nationally

“Where Hope Grows” opened nationally on Friday, May 15^th  2015.  The movie (formerly known as “Produce”) follows the story of Calvin, a professional baseball player sent to early retirement due to his panic attacks at the plate. He struggles with the curveball life has thrown him but is invigorated when he meets a young man with Down syndrome (DeSanctis) that works at the local grocery store. Their lives become intertwined, and as their friendship develops, Calvin begins to see the world through Produce’s eyes and improve his own outlook on life.

 

DSI Hires Self Advocate, Angie Cain

Down Syndrome Indiana welcomed long time volunteer and Self Advocate, Angie Cain to its staff.  Angie has been a dedicated volunteer since September 2006 and has donated over 2,300 hours to the organization. “I am so excited!” said Executive Director, Lisa Wells about having Angie on the DSI staff team. Angie was awarded the National Down Syndrome Society Self Advocate of the Year award in 2014 and the Colts Golden Horseshoe Award in 2010.  Angie also volunteers her time for Best Buddies Indiana, Windemere Nursing home and Community North Hospital, as well as, working for the YMCA and Kohl’s.

 

GiGi’s Playhouse Opens in Indy

Down Syndrome Indiana was one of the first to give a warm welcome to the newest Down syndrome organization in the neighborhood, GiGi's Playhouse-Indianapolis! Down Syndrome Indiana recognizes that there are varied interests among the Down syndrome community. Examples include geographical considerations, cultural considerations, educational considerations and age considerations. Down Syndrome Indiana also recognizes and welcomes the benefits of a variety of community groups that serve these varied interests among our families.

 

We believe that a partnership between these two separate nonprofit organizations, Down Syndrome Indiana and GiGi's Playhouse, will enhance the variety of resources and programming available to the Down syndrome community in Indiana. We look forward to a mutually respectful relationship where Down Syndrome Indiana and GiGi's programs will complement each other rather than compete. DSI will continue its current outreach, education, support and advocacy programs including the Buddy Walk(R), First Call, parent support groups, educational presentations, the Fly-in and the DSI D.A.D.S. Golf Outing. GiGi's Playhouse is a direct service provider that will offer programs that are both educational and therapeutic in nature. For more info: http://gigisplayhouse.org/indianapolis/.

 

 

DSI Welcomes 12^th Community Group!

Do you live in Muncie or the surrounding area and are interested in joining a group that can provide resources, networking and support to your family? Then be sure to join our ECI Community Group.  The group is being led by Jody and Jodi Kress. They are the parents of two children, their son having Down syndrome. "Our family is excited to help bring Down Syndrome Indiana to East Central Indiana. We hope this new community grows into something that positively impacts families who experience Down syndrome," the Kress family states. http://www.dsindiana.org/East-Central-Indiana.php.

 

 

Global Down Syndrome Foundation Awards DSI $10,000 grant

 

The Global Down Syndrome Foundation (http://www.globaldownsyndrome.org/) awarded Down Syndrome Indiana a $10,000 grant to host a 2016 conference. Please save the date for May 13^th and 14^th, 2016 as DSI prepares to bring you high quality speakers, such as Pat Winders, author of Gross Motor Skills for Children with Down syndrome. In addition, there will be workshops on Down Syndrome and Behavioral Changes with Aging – Dementia and other Conditions and puberty. 

 

New Law Eliminates R Word from Indiana Code

On July 24^th, Governor Mike Pence signed SB 420 into Law. The new law replaces the term, “mental retardation” with the words, “intellectual disability” in Indiana code. An article by WISH TV covered the signing: http://wishtv.com/2015/07/24/new-law-eliminates-r-word-from-indiana-code/.

Marsie Celebrates her 80^th Birthday!

MARTHA “MARSIE” MATHAUER celebrated her 80^th Birthday with family and festivities!  We believe that Martha is the oldest living person with Down syndrome in the State of Indiana and she is such a blessing to all who meet her.  She has gifted all of us with her humor, laughter and kind heart. Click here to read more: http://dsindiana-exectivedirector.blogspot.com/2015/09/marsie-celebrates-her-80th-birthday.html.         

 

Governor Pence Issues Proclamation in Support of October Disability Employment Awareness Month and 25^th Anniversary of ADA

In recognition of National Disability Employment Awareness Month, Gov. Mike Pence issued an executed proclamation encouraging Hoosier leaders and employers to "further advance the message that our family members, friends, and neighbors with disabilities are important to a diverse Hoosier workforce." National Disability Employment Awareness Month is a nationwide campaign that raises awareness about disability employment issues and celebrates the contributions of America's workers with disabilities, past and present. The theme for this year, which marks 70 years since the first observance, is "My Disability is One Part of Who I Am."

Coinciding with the 25th anniversary of the passage of the Americans with Disabilities Act, Gov. Pence noted that "despite our successes, less than 40 percent of working-aged Hoosiers with disabilities are employed, a reminder that we all still have work to do to ensure equal opportunity and participation in the workforce."

To read the Governor's full proclamation, click here: http://in.gov/gpcpd/files/NDEAM_Proclamation.pdf.

 

Renee Petrie and Kelly Gillespie win STAR Awards

Congratulations to the 2015 STAR Award recipients, Renee Petrie and Kelly Gillespie.

 

Renee Petrie currently resides in Lafayette, IN with her husband, Jonathon, and her two children, Ben and Caroline. Caroline is, “blessed with Down syndrome”, as Renee would say. Renee is the current leader of the DSI Lafayette Area Down Syndrome Organization (L.A.D.S.O.). Renee is instrumental in planning their monthly speakers, activities and fundraisers.  Of course, Renee does not stop there. She was the District 4 Family Advocate for The Arc of Indiana and is currently finishing up her two-year term on the Family Advisory Council for Children’s Special Health Care Services. In her free time, she presents trainings to families and is very involved in Tippecanoe County. Renee embodies our entire mission at DSI.  We are sincerely grateful for the love, support and effort she puts into everything she does. Renee is truly dedicated to enhancing not only the lives of individuals with Down syndrome, but to everyone around her.

 

Kelly Gillespie is a loyal volunteer with DSI. She recently participated in the IUPUI S.I.T.E. program; a transition program in which students spend one to two years on the IUPUI campus taking classes, engaging in typical activities, interacting with college peers and learning to access the campus and community.  For example, since the DSI office is located on a bus route, Kelly uses the city bus to get to and from her volunteer shifts at DSI. During the time that Kelly has spent with DSI, we have come to learn so much from her. We have seen her grow and excel in numerous ways. She brings life to the office each day she is in. It may not have always been an easy road, but Kelly’s determination to do her best always outshines. She is smart, kind, sassy and sweet! DSI is thrilled to have Kelly as a part of our team! Her contributions to DSI have not gone unnoticed. We truly appreciate her hard work, work ethic and cannot wait to see where life takes her next.