National Down Syndrome Society named 2014 Brand of the Year

Washington, D.C. (March 6, 2013).

The National Down Syndrome Society (NDSS) has been recognized as the Brand of the Year by Harris Poll EquiTrend.  EquiTrend is an annual study that started in 1989, yet awards have only been given to the top brands since 2011 and started the Disability Non-Profit category in 2012. The award is given out based on the Brand Equity Index which measures an organizations reach in Familiarity, Quality and Intention (intention to purchase/use/watch/own/donate). “NDSS is deeply honored to be recognized by the Harris Poll as the brand of the year in the Disability Non-Profit category,” said NDSS President Jon Colman.  “This award is truly a high compliment demonstrating to all of us at NDSS and the Down syndrome community that we are making strides towards fulfilling our mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.”

3rd World Down Syndrome Day Conference, 3/21 UN Headquarters NYC

REGISTRATION NOW OPEN AND FREE OF CHARGE – REGISTER ONLINE HERE TODAY

We urge you to come along in person to the 2014 WDSD Conference to show your support and to help us to represent people with Down syndrome with a single global voice at the United Nations!

Down Syndrome International is delighted to announce that the 3rd World Down Syndrome Day Conference, based on the theme "Health and Wellbeing - Access and Equality for All" will take place at United Nations Headquarters in New York, USA on 21 March 2014 in the Economic and Social Council Chamber from 1.30pm-6pm.

Confirmed speakers include:

Dr William Mobley - United States - Distinguished Professor, Chair of the Department of Neurosciences and Executive Director of the Down Syndrome Center for Research and Treatment at UC San Diego and the Florence Riford Chair of Alzheimer Disease Research.

Dr Yvonne Maddox - United States - Deputy Director, National Institute of Child Health and Human Development at the National Institutes of Health and Chair of The Down Syndrome Consortium.

Dr George Capone - United States - Director of the Down Syndrome Clinic and Research Center (DSCRC) at Kennedy Krieger Institute and Member of Down Syndrome Medical Interest Group- USA.

Dr John Mayer - United States - Professor of Surgery, Harvard Medical School, Past Chair, Society of Thoracic Surgeons, Cardiac Surgeon, Boston Children’s Hospital.

Special Olympics/UNICEF - "Healthy Athletes" Health Screening and Intervention Program for Children with Intellectual and Developmental Disabilities.

Professor S Suresh - India - Chief Medical Director, MediScan Systems, Chennai, India.

Sheila Heslam - United Kingdom - Services Director, Down's Syndrome Association, presenting with self-advocate Sara Pickard on new Adult Health Book for people with Down syndrome to use with their medical practitioners, prepared in consultation with people with Down syndrome, their families and doctors.

Nine Out of Ten Mothers in Norway Choose Abortion for Down Syndrome Diagnosis

by Øzgur Camur from The Nordic Page Norway:

 

In 2012, 49 children were born with Down syndrome in Norway, the lowest figure ever recorded. 87 percent of women knowing that the fetus had Down syndrome chose to have an abortion.

New figures from the Medical Birth Registry (Medisinsk fødselsregister) show that 49 children were born with Down syndrome in 2012. This is the lowest figure since the birth registration has started to be applied in 1999, writes Dagsavisen.

According to the newspaper’s report, about nine out of ten pregnant women terminated their pregnancy, when they learned that the fetus had Down syndrome. The percentage has been between 80 and 90 percent for several years. As a result, 69 fetuses with Down were aborted in 2012.

Christian Democrat deputy Dagrun Eriksen found the trend as a strong signal of failing society, even though she emphasized that she does not criticize the individual’s choice to have abortion.

- First and foremost, we as politicians should criticize ourselves. The most important thing is that parents who give birth to disabled children should get the help they need, she says.

‘Clogged pipeline’ may explain Down syndrome leukemia

by Josh Barney-Virginia, University of Virginia from Futurity:
New insight into a mysterious form of leukemia that can appear and then disappear in children with Down syndrome could have implications for other forms of leukemia and even other diseases.
Researchers have linked a mutation causing Down syndrome-associated leukemias to abnormalities in cells that produce platelets, called megakaryocytes.
Essentially, this mutation is interfering with an enzyme, Calpain 2, that acts as an initial trigger for a chain of reactions that determines size and shape of megakaryocytes. This interference causes the normal process of cellular enlargement and platelet production to get hung up.
“It’s like there’s a long pipeline and there’s a clog,” says Adam N. Goldfarb of the department of pathology at the University of Virginia. “We think it’s this pipeline that’s getting clogged in this disease and other diseases.”
As reported in the journal Developmental Cell, leukemia cells with the mutation display a critical deficiency of Calpain 2, and the enzyme’s absence leaves them stuck in an early stage of development, contributing to the development of Down syndrome-associated leukemias, Goldfarb says. And that could be the case in other forms of leukemia as well.
“These leukemias in Down syndrome aren’t that common, but this finding has implications for other leukemias in that it lets us understand basic growth and development patterns,” Goldfarb says.

Appeals court judge under fire for ordering new rape trial of woman with Down syndrome

by Bill Rankin and Steve Visser from the Atlanta Journal Constitution:
A state Court of Appeals judge has come under fire from Fayette County prosecutors for ordering a new trial for a man convicted of raping a woman with Down syndrome.
Judge Christopher McFadden overturned the jury’s guilty verdicts against William Jeffrey Dumas, who was convicted of repeatedly raping the 24-year-old woman on Oct. 18, 2010.
McFadden issued the ruling on a request for new trial after he had sentenced Dumas to 25 years in prison for the alleged assault. At the time, McFadden had been allowed to take leave of his appellate court duties and preside temporarily as a Superior Court judge in Fayette County.
Fayette County District Attorney Scott Ballard, who prosecuted the case, said Wednesday he received the news of McFadden’s order with “disgust.”
“I had to go visit the Down syndrome woman who was the victim of the rape and tell her that even though a jury had convicted her assailant of the crime, the judge was giving the guy a new trial,” Ballard said. “Her parents were, as you can image, outraged. … I just hope we can get some justice.”

Boise cheerleader with Down syndrome inspires teammates

by Ashley M. Williams from USA Today:
Rachel Massingale, a cheerleader for Centennial High School in Boise, is doing more than just firing up crowds -- she's inspiring them.
Rachel, who has Down syndrome, has proved to all those around her what's possible when you're determined to reach your goals. Cheerleading coach Melissa Casey says not only has she been able to learn 52 cheers, but she "has even added her own little spirit to them."
Her teammates praise her for her incredible passion and the joy that she brings to everyone .
"I am very inspired by Rachel; I think she's taught us all a lot," teammate Mika Muta told KTVB. "She always gives 100%."

Crenshaw Earns 2014 NDSS Champion of Change Award

from InsuranceNewsNet.com:
WASHINGTON
, Feb. 27 -- Rep. Ander Crenshaw, R-Fla. (4th CD), issued the following news release: The National Down Syndrome Society today (2/27) awarded Congressman Ander Crenshaw its 2014 Champion of Change Award, citing his focus on advancing the nation's commitment to people with Down Syndrome through the Achieving a Better Life Experience Act (ABLE Act - H.R. 647/S. 313). "Receiving the 2014 Champion of Change award is a great honor, but really the members of the National Down Syndrome Society and its wide base of dedicated volunteers deserve to take a bow," said Crenshaw, on Thursday after receiving the award. "Plain and simple: Individuals with disabilities should have access to the same financial planning tools as other Americans. That's why Congress needs to pass the ABLE Act. Tax free savings accounts would allow millions who do not have that freedom today an opportunity to pro-actively plan for their future and live to their full potential. With the steadfast commitment of NDSS and other organizations, we will all reach that goal together."

Globetrotters Sign 3-point Ace With Down Syndrome For Philadelphia Game

from CBS 3 Philly:

PHILADELPHIA (AP) — Kevin Grow, a high school senior with Down syndrome who became an Internet hit with his 3-point shooting, will play next month for the Harlem Globetrotters.

Grow will suit up for the Globetrotters in the fourth quarter of their March 9 game in Philadelphia. Grow, a devout Globetrotters fan from suburban Philadelphia, was added to the roster Tuesday as their 3-point specialist.

He signed a ceremonial two-day contract last week with the Philadelphia 76ers. He took part in pregame activities, and received a jersey.

The 18-year-old Grow spent four years as team manager of the Bensalem High School boys basketball team. He played in two games, hitting four 3-pointers in the final 2 minutes of his second one, and highlights went viral.

Teen with Down syndrome becomes magazine model

by CNN Wire:
COLLINSVILLE, Ill. (KMOV) –  Monday was “Karrie Brown Day” in Collinsville, Illinois. The teenager was honored after she made her modeling debut in a national magazine.
After the 17-year-old girl’s Facebook page received 11,000 “likes” in less than a week, her favorite clothing store, Wet Seal, flew her to California to become their first model with Down syndrome.
“One of the girls from corporate Wet Seal said where did she learn to do those modeling moves? I said I have absolutely no idea, they said, she’s got a natural talent for it,” Karrie’s mom Sue Brown said.
When Karrie was a week old, a doctor told Sue never to expect anything from her. More than 28,000 Facebook likes and a stint in a national magazine later, it’s Sue who has the last laugh.
“They did a two page article on her which just kind of blew Karrie away, to see her picture in the same magazine with Ross Lynch and Selena Gomez and One Direction,” Sue said.
Karrie will walk the red carpet at a pre-Oscar event on March 1.

ABLE Act Would Allow Families to Prepare for the Future

by Laurel Joss from Autism Daily Newscast:
Caring for a loved one with autism is expensive. The expenses of raising a child with autism can include medical care, therapies, and respite care, but they do not end there. When children with autism grow up, they still have needs, including housing, utilities, and for many, around-the-clock supervision.
A recent survey by Autism Speaks of over 10,000 people from various socioeconomic and ethnic backgrounds in the United States found that only one out of four families were saving money for their child’s future needs. This statistic is frightening, considering the sheer numbers of children who will be ageing out of the school system in the next decade.
The Achieving A Better Life Experience Act (ABLE Act – S.313/H.R. 647) would allow families in the United States to open tax-free accounts similar to college savings accounts, health savings accounts, and individual retirement accounts in order to provide for their child’s future needs. Funds could be used for qualified expenses, including medical and dental care, education, housing, transportation, and job training programs. The ABLE Act also includes Medicaid fraud protection and a Medicaid pay-back provision when the beneficiary passes away.
Money saved through an ABLE account would not count against an individual’s eligibility for federal benefits, allowing individuals with disabilities to earn an income and save money towards their future without losing the benefits necessary for daily living.
Canada currently offers a similar program using Registered Disability Savings Plans (RDSP).