Thursday, June 30, 2011

Times Square Video Contest Info

from NDSS:

Contest Information

Celebrate the 17th anniversary of the Buddy Walk® by entering the Times Square Video Contest. The video, which showcases individuals with Down syndrome from all over the world, will air in the heart of Times Square on September 24, 2011 at 10:15 am ET.  The New York City Buddy Walk will immediately follow the video at the Great Hill in Central Park.

Each year, NDSS receives thousands of photo submissions for the Times Square Video Contest. The winning photographs represent the diversity of the Down syndrome community.  ONE photo per individual can be submitted to the contest. If you send more than one photo, NDSS will only use the first submission. 

All individuals in the photo sent to NDSS must sign off on a consent form to be considered for the video. If more than one person is in the photo, please indicate which individual has Down syndrome. 

Click here to submit a photo and consent form online for the 2011 Times Square Video Contest.

If you prefer to send a photo and consent form by mail, please use following address:

Attn: Call For Photos
666 Broadway, 8th Floor
New York, NY 10012

To download a copy of the consent form, please click here.

The deadline for submitting a photo is July 15, 2011 at 11:59pm ET.

Final photo selection will take place on July 27, 2011 by an independent third party and winners will be contacted by a representative from NDSS via email or telephone starting the week of August 1, 2011.

NDSS will notify you ONLY if we accept your photograph for the video, and we are unable to return any photos.

Affiliates and others interested in spreading the word can click here to download the 2011 Times Square Video flyer, which has all of the information necessary to encourage members and friends to participate!

Be inspired! Click here to view the 2010 Times Square Video.

from the NDSS:

NDSS is pleased to spotlight their newest National Buddy Walk Partner, Down Syndrome Footprint. Established in 2009 by new parents Mike and Katia Hauser, Down Syndrome Footprint started from a vision seeking a unique and universal image that would both represent Down syndrome, and develop awareness, empowerment and employment for individuals with Down syndrome. Down Syndrome Footprint is proud of the fact that each of its products is either made or packaged by an individual with Down syndrome.
To help support each approved Buddy Walk, Down Syndrome Footprint is offering each Walk a basket of Down Syndrome Footprint merchandise. In addition, Down Syndrome Footprint has come up with three different ways that you can raise funds for your Buddy Walk or your organization using their merchandise risk-free.

The Down Syndrome Footprint Foundation is committed to creating greater awareness, empowerment, and employment opportunities for all individuals with Down syndrome.

This triangle of advocacy is designed to improve the success for individuals with Down syndrome, their family members, and the community as a whole.

Wednesday, June 29, 2011

Down Syndrome, Sleep Problems Linked


Research under way at the University of Arizona is revealing a connection between quality of sleep and the learning and memory functions in children with Down Syndrome.

"It's well known that children with Down Syndrome are vulnerable to developing sleep apnea which results in pauses in breathing," UA psychology student Jennifer Breslin says. Breslin has been conducting a study looking at children with Down Syndrome and the occurrence of sleep apnea.

"if we can demonstrate that kids with poor sleep have poor cognitive outcomes, we can make a case for intervention and ultimately improving their behavior and learning ability," she says. "If we could give these kids a better quality of life, that would be awesome."

Cognitive Development and Down Syndrome: Age-Related Change


Cognitive Development and Down Syndrome: Age-Related Change on the Stanford-Binet Test (Fourth Edition)

A study in the May issue of the American Journal on Intellectual and Developmental Disabilities by researchers affiliated with the University of Queensland (Australia) examined Stanford-Binet test performance by a large group of individuals with Down syndrome.  Authors report that the performance of the study sample on Stanford-Binet subtests measuring crystallized abilities (the ability to use skills, knowledge, and experience)  tended to plateau early in adulthood, whereas the test of fluid ability (the capacity to think logically and solve problems in novel situations, independent of acquired knowledge) continued to increase beyond the age of 30.  Authors note that the trend they observed is in opposition to the general population in which fluid abilities typically peak in early adulthood while crystallized abilities continue to increase. (full text available at no cost with member subscription to AJIDD)

Growth models for subtests of the Stanford-Binet Intelligence Scale, 4th edition (R. L. Thorndike, E. P. Hagen, & J. M. Sattler, 1986a, 1986b) were developed for individuals with Down syndrome. Models were based on the assessments of 208 individuals who participated in longitudinal and cross-sectional research between 1987 and 2004. Variation in performance among individuals was large and significant across all subtests except Memory for Sentences. Scores on the Memory for Sentences subtest remained low between ages 4 to 30 years. Greatest variation was found on the Pattern Analysis subtest, where scores continued to rise into adulthood. Turning points for scores on the Vocabulary and Comprehension subtests appeared premature relative to normative patterns of development. The authors discuss development at the subdomain level and analyze both individual and group trajectories.

disability employment statistics update


Work was particularly hard to come by for Americans with disabilities last year, according to a newly released report showing that in 2010 less than 1 in 5 with disabilities held jobs.

The report from the U.S. Department of Labor finds individuals with disabilities in all age groups were less likely to be employed than their typically developing peers.

Moreover, when those with disabilities did find jobs, they were more often part-time positions or opportunities for self-employment and less likely to be management or professional jobs.

The statistics offer a long-range view on employment data that’s released monthly by the Labor Department.

Though the picture painted by the report is a sobering one, the hiring experiences of people with disabilities appear to be steady. Even as unemployment soared to 9.4 percent for the general population, the jobless rate for those with disabilities remained largely unchanged from 2009 to 2010 at 14.8 percent.

Meanwhile, about 80 percent of those with disabilities were not considered to be in the labor force, meaning that they were not employed and were not looking for work. Just 30 percent of people in the general population fell into this same category.

One area that did appear to improve job prospects for workers with disabilities was increased education, the report found. However, even those with advanced degrees lagged behind similarly educated individuals without disabilities when it came to hiring.

ESPN To Air Special Olympics World Games


The Special Olympics World Games kick off Saturday in Athens, Greece, but fans around the world will be able to get in on the action through a deal with ESPN.

The sports network said this week that it will air the opening and closing ceremonies of the games live on

ESPN will also include coverage of the Special Olympics games on the network’s main website and news clips of the event could air on television as well.

This summer’s games in Athens are the 13th Special Olympics World Games, which are held every two years and alternate between winter and summer.

The event is expected to draw some 7,000 athletes from 180 countries to compete in 22 different sports from swimming to track to table tennis.

The live webcast of the opening ceremonies will be Saturday at 1 p.m. EST. Closing ceremonies will will air July 4 at 1 p.m. EST.

Among those attending what’s expected to be the largest sporting event in the world this year will be a White House delegation headed by Jill Biden.

Special Olympics World Summer Games Athens 2011

Special Olympics World Summer Games Athens 2011 will officially be under way for 10 days from 25 June to 4 July, more than 7,000 Special Olympics Athletes from nearly 180 countries around the world will compete in the largest international multi-sport event of the year, featuring 22 Olympic-type sports.

The 2011 World Games will be officially opened by His Excellency Karolos Papoulias, President of the Hellenic Republic, at a ceremony that will be broadcast around the world and locally aired live by Greek host broadcaster, ERT.  The broadcast begins at 20:30 local time (17:30 UTC/GMT) and will feature performances and presentations by internationally renowned artists and celebrities. 

The highlight of the Opening Ceremony will be the Parade of Athletes during which every Special Olympics delegation will march into Athens’ historic Kallimarmaron Panthinaikon Olympic Stadium – site of the first Olympic Games of the modern era – each team led by a sign bearer wearing traditional Greek costume.

The athletes and spectators will be entertained by legendary singer, songwriter, musician and producer Stevie Wonder, singing sensation Alkistis Protopsalti, tenor Vittorio Grigolo, tenor Mario Frangoulis and recording artist Vanessa Williams will host the ceremony, while actress Zhang Ziyi and author Maria Menounos will make special presentations.

These Special Olympics World Games are uniting the world in Athens, Greece and will be 10 days of sports excitement with various community building events throughout.  Tens of thousands of athletes, families, friends, sponsors, and spectators have traveled to Greece for the World Games.

About Special Olympics
Special Olympics is an international organization that changes lives through the power of sport by encouraging and empowering people with intellectual disabilities, promoting acceptance for all, and fostering communities of understanding and respect worldwide. Founded in 1968 by Eunice Kennedy Shriver, the Special Olympics movement has grown from a few hundred athletes to more than 3.7 million athletes in over 170 countries in all regions of the world, providing year-round sports training, athletic competition and other related programs.  Special Olympics now takes place every day, changing the lives of people with intellectual disabilities in places like China and from regions like the Middle East to the community playgrounds and ball fields in every small neighborhood’s backyard.  Special Olympics provides people with intellectual disabilities continuing opportunities to realize their potential, develop physical fitness, demonstrate courage, and experience joy and friendship. Visit Special Olympics at

Tuesday, June 28, 2011

Football Camp for the Stars supporting people with Down syndrome


Through his fascination with football, Chris McGough has learned to love the limelight. Just not enough to prefer star quarterbacks Drew Brees, Ben Roethlisberger or Matt Cassel to a self-described journeyman who has briefly been their backup.

"Tyler Palko is my favorite in the NFL," McGough says of the former West Allegheny and Pitt star now with the Kansas City Chiefs, "because he's my friend."

Their friendship runs so deep that Palko teamed with the McGough family to form TC House, a nonprofit organization designed to build a group home in Imperial for adults like Chris with Down syndrome. Its annual golf outing has raised $200,000 in seven years, as well as awareness for the chromosomal condition and its impact on the lives of family and friends.

For as much as his friendship with an NFL player gives McGough a sense of stardom, the reciprocal effect is reversed: McGough has shown Palko how to gain better perspective by never placing him on a pedestal.

"He's helped me way more than I've helped him," Palko said Friday morning at Quicksilver Golf Course in Midway. "I remember a game where I threw an interception to end the game and came off the field all hot and bothered and (ticked) off. My parents stayed away, but Chris came up and hugged me and said, 'Tyler, you threw it to the wrong guy.'

"It comforts me to know that there are people in the world like Chris that are put here on earth for a purpose, to not have someone look at you like, 'Can you sign this?' Or, 'Can I have free tickets?' He just wants to come up and give you a hug. He doesn't care if you win or lose. He just wants you as a friend."
After spending the past eight years as the ball boy and manager for the West Allegheny and Duquesne football teams, McGough, 22, wants nothing more than to play the game that he loves so much.

That's where another NFL connection comes in.

San Francisco 49ers defensive line coach Jim Tomsula, a West Homestead native, hosted his second Football Camp for the Stars for males with Down syndrome at Thomas Jefferson High School. McGough is one of 35 campers who went through drills Thursday and scrimmaged yesterday.

"I coach football for the 49ers, so it ends up being the NFL, the three-letter deal — and I get all that. But being able to see the camp in California was a big deal," Tomsula said of visiting Mike Machado's camp at Valley Christian High in San Jose. "They were getting it, and it was just pure competition. The closest I've seen to football in the backyard was high school football, but even that is getting to be not as pure. This is pure, man.

"I said, 'This would be perfect for Pittsburgh.' "

Perfect in that, even during the NFL lockout, the camp is getting support from the league's players and coaches. Steelers backup quarterback Charlie Batch and former Penn State and NFL receiver Bobby Engram, now a quality control assistant with the 49ers, served as guest speakers.

Tomsula and TJ's Bill Cherpak, who both played for George Novak at Steel Valley, joined with the Woodland Hills coach and their players to serve as instructors. They made it as authentic as possible, never cutting the campers a break — which is just the way they want to be coached.

"We're not going to put on the gloves and treat them soft and gentle," Tomsula said. "You try to make it as real a practice as you can, and they appreciate being treated just like a kid instead of a kid with."

That's why it was hard to tell what Steve McGough was more excited to talk about: building TC House with a back deck that overlooks West Allegheny's football stadium or watching his son Chris fulfill a dream by playing football under the Friday night lights.

"It's his chance to go out and learn these things that he's watched for years," Steve McGough said. "He sees the Friday nights when other guys get recognition, and he gets to do that. When he's competing in the Camp for the Stars, it's with kids of his talent. And it's all about encouragement. To see him compete, it's no different for me than any other parent. It's exciting.
"He'll talk about it for a year and do it again next year."

Score it a touchdown for those touched by Down syndrome.

Monday, June 20, 2011

People with disabilities in Minnesota facing cuts in services

Minnesota is staring at a government shutdown.  The closure will no doubt effect thousands who depend on government aid, but some say the current budget proposed by the legislature is unacceptable.  Leaders and family members of people with disabilities say they have already seen service cuts of 5-8% since 2005. They do not want any more services taken away.

The program coordinator of the Arc West Central says her son, Aaron, who has Down syndrome, is like 2000 others unable to get a Developmental Disorder waiver under the cuts. Because of this he does not have staff to help him learn basic life traits and continue on with his independence.  She fears one day he will end up in a group home.

"He wouldn't get to make choices necessarily and it's just a shame that we don't give people these opportunities." Donna Atherton, Are West Central Coordinator, said.

Senator Keith Langseth says a big reason the governor has reject the current budget is because of deep cuts to programs that help people. Dayton has proposed 1.8 billion - of the 3.6 billion in debt - be taken care of with cuts. He would like the other 1.8 billion to be taken care of in the form of revenue. Though, Langseth says it would be an impossibility to for the state to come to an agreement like that before June 30th.

wanting to live as independently as possible


How will my child fare when he leaves home? And what will happen to him when I'm gone?

These are questions most parents worry about. But they weigh especially heavily on the parents of children with autism, Down syndrome and other developmental disabilities.

"Parents say this all the time: 'When I'm no longer here, I want to know they're still going to have a place to live and somebody is going to make sure they're OK,'" said Jim Whittaker, executive director of The Arc Jacksonville. "That's the biggest fear the majority of families have."

It's a fear that will become even more common in coming years, as the growing number of children with disabilities become adults with disabilities.

When The Arc recently began moving forward with plans for a 32-acre community near Beach and Hodges boulevards - planning to break ground in 2013 and have the independent and semi-independent living ready in five to 10 years - Steve and Joy Gutos were among those who viewed it as a godsend.

Their 25-year-old son, Ryan, lives at home now and has a part-time job as an office assistant at the Duval County Public Defender's Office. But he would like to eventually live in his own place. And his parents would like to know the place is a good fit for him, not only now, but in the future.

They've spent years researching options near and far, not feeling quite comfortable with group homes or supported living in the general community. Something like the Hodges Community seemed like the perfect mix of independence and structure.

"We're not saying the other alternatives are wrong, but we believe this is what is best for our son," said Steve Gutos, a board member at The Arc. "It's certainly a choice that needs to be there for everyone."
Not everyone agrees.

The federal government has proposed a rule change to Medicaid - specifically the Home and Community-Based Services Waiver - that would mean such funds could still be used to live in group homes and supported living in an apartment or condo, but not for something like the Hodges Community.

"It's not going to kill it," Whittaker said. "But it is going to make it much more difficult for people who don't have means to live there."

The reason some want the rule: They believe a planned community like this is a step backward toward the days of institutions. And they say the rule, which would only permit funding for care that allows patients to "engage freely in the community," would ensure the inclusion of disabled adults into society.

Supporters of The Arc's plans say the community would be anything but institutional - and would be a better fit for some than a small group home or supported community living.

"The Arc Jacksonville and these families aren't saying to other families we want to take away your choice," Whittaker said. "We just want this other choice."

So during a public comment period that ended on a Tuesday, supporters of the Hodges Community have been writing letters to the Centers for Medicare and Medicaid Services (CMS).

One of those letters was written, with the help of his mother, by Ryan Gutos.

He and his parents have visited some very nice group homes. But he told his parents he didn't want to live there, that they seemed too restrictive. And the idea of trying to live mostly on his own, in the general community, didn't appeal to him (and concerned his parents). A community designed for adults with disabilities excited him (and gave his parents peace of mind).

In his letter, he explained that he has lived at home with his parents and younger sister, but eventually would like to live in a neighborhood with his friends. He wants to drive a golf cart around the community, hang out, go to church, listen to country music and keep working at the Public Defender's Office.

"If this rule is passed, I won't be able to live there," he said. "Please allow my funding to stay with me no matter where I choose to live."

In her letter to CMS, Joy Gutos explained there isn't a "name or label" for her son's disability, other than that he is developmentally delayed. She explained many of the things he can do. Dress himself, get ready for work, ride his bike around the neighborhood, win over people with his endearing demeanor. But she also said, "Ryan will never make wise decisions. He always will be vulnerable."

She described how he can count money if he tries really hard, but can't tell how much he should get back from a transaction. He won't give himself medicine. He doesn't turn off the shower unless told to. And just when they think he could live in the general community, there is some incident that reminds them he needs more security and supervision.

"If he has these two things, he will surprise us, as he has many times in the past, not with his disability, but with his ability," she wrote. "The Arc Jacksonville has plans to build exactly what we're looking for."
She pointed out that the rule will continue to allow this funding to be used for hundreds of retirement communities in the state. But if enacted, it won't be available for the small handful of communities developed or planned for disabled adults.

Could Ryan continue to live at home? Absolutely, she said. But is it the best thing for him? Not at all. He doesn't want to live at home forever. And, of course, the reality is that he can't.

"There are no other family members who can take Ryan in when we are gone," his mother wrote. "This is his future. Please do not impose this rule on us."

Delaware's unique Blue Gold Hand-in-Hand program


It was August of 1973, and Tony Glenn, a recent graduate of Conrad High School, had earned a treasured spot in the annual Blue-Gold All-Star high school football game.
The contest had been a summer staple since 1956, matching the First State's top recent graduates in a North vs. South format. The 56th annual game was played Saturday night at Delaware Stadium.
Two prominent Wilmington-area sportsmen, Jim Williams and Bob Carpenter, started the game to raise money for what were then termed "mentally retarded" children. Each was the father of such a child.
Glenn's mother, Rose, had reminded her son, "This is more than just about you," in reference to that cause as he headed to the two-week camp leading to the game at the University of Delaware.
"I didn't pay much attention to that," Glenn confessed recently.
But, one day at practice, Glenn came to understand the Blue-Gold game's meaning in a way he didn't foresee. It would permanently shape him, as he would begin a lifelong association with the game. He has spent the past 10 years as executive director of the Delaware Foundation Reaching Citizens with Cognitive Disabilities (DFRC), which operates the game. DFRC funds programs that aid those citizens.
Glenn's enlightenment occurred on a practice field on the stadium's southern edge, where the Bob Carpenter Center now sits.
"The coaches called us over on the field one day and said there were going to be some school buses coming down from the Mary Campbell Center, and some retarded kids are going to be getting off the bus," Glenn recalled. "Back then, it was appropriate to use the word 'retarded.' I remember when the coach told us that, I just froze."
Glenn's fear was typical. He hadn't spent time around anyone who fit that description.
"All of a sudden, those buses pull up, and my knees start to shake," he said. "Sure enough, the first kids getting off the bus and running up to me have Down syndrome, and now I'm just petrified because, again, it's just ignorance, it's not knowing and not being around it.
"So then, all of a sudden, the kid takes my helmet and starts running. Another kid comes over, and I spend 15 minutes running around playing tackle football with three or four kids. Then I turn around, and they're getting on the bus, and the kid's taking my helmet with him. So it forces me back over to the bus, which is great. I get a chance to get the helmet and give the kid a hug and all that kind of stuff."
By that time, Glenn had been transformed.
"I'm walking away from the bus, and I'm thinking I was ashamed of myself because I was so afraid," he said. "Then I remember the buses leaving, and I just said, 'What's the difference?' We just had a great time, and something inside of me stirred.
"The next year, I came here to [the University of] Delaware to play football, and I joined the [Blue-Gold] committee right away."
Eventually, he would become the game's anointed leader because some felt he was the only one who could save DFRC from possible extinction.
For his dedication to the Blue-Gold cause, Glenn is among The News Journal's 50 Who Matter, a biweekly series spotlighting Delawareans who usually work quietly behind the scenes to improve others' lives.
A lasting impact
In much the way Glenn was initially touched, the Blue-Gold game has impacted thousands of Delawareans over the years, especially since the advent of its Hand-in-Hand Program in 1974.
It matches football players, cheerleaders, band members and school ambassadors with a cognitively disabled "buddy" for various activities.
And on this Father's Day, Glenn once again can share the Blue-Gold experience with his sons.
Several years ago, Ryan Glenn, now a UD student working in football operations, served as an ambassador for the game. This year, Justin Glenn is a Blue lineman out of A.I. du Pont.
Blue-Gold involvement is second nature to Justin Glenn, but he has enjoyed watching his teammates come to understand the game's deeper meaning, too.
"They're a little skeptical at first," he said. "They didn't know what was going to come out of it when we first started in January. Once they met their buddy, they sort of had their bond and started to love their buddy and became good friends with their buddy. It's awesome to watch."
To Tony Glenn, that's the whole idea. It was hatched by others, then proudly embraced by him to the extent that it became his life's work and his daily passion.
"It all goes back to people caring about people, that we're all connected, believe it or not," Glenn said this week while watching the Blue team practice. "It's important because of the tradition of this game, but also because you're picking some of the finest high school leadership, not just players, but your cheerleaders, your ambassadors, which are your school leaders, and your band. All these kids have to be recommended, and it's an opportunity to display our young leadership in the state. From that standpoint, it's very important because the tradition continues, and now you have almost 10,000 alumni.
"If you've been in Delaware a while, you're touched by this, you can't escape this. ... It's part of the fabric of the state. So from that standpoint, it's huge. But it's the teaching that goes on that makes it important."
Glenn went on to play center for coach Tubby Raymond's Blue Hens, was a longtime volunteer assistant coach on his UD staff and taught at St. Mark's High School for 18 years. But every summer, he was involved in the Blue-Gold game, which moved from August to June in 1983.
Initially, it was selling T-shirts and tickets and working as an athletic trainer. In 1984, Glenn was camp director, athletic chairman and assistant coach. He was game chairman, the person who oversees all aspects of the event itself, in 1988.
In 1991, he was elected to the board of trustees, a year after promising Carpenter, just before the game's co-founder died, that he would devote his life to Blue-Gold.
Ten years later, after Glenn had attained a doctorate at Wilmington University with a dissertation on DFRC and Blue-Gold, he was named executive director.
At the time, DFRC was an all-volunteer organization suffering from a lack of leadership, said Jodi Keller, a longtime board member who is now its vice president. It had briefly experimented, unsuccessfully, with having a paid executive director several years before.
She and others on the board felt DFRC not only needed full-time leadership, but it had to be from Glenn because of his unrivaled passion for its mission.
"We were actually thinking that maybe we should throw in the towel," said Keller, whose son Wes, now 18, had been a "buddy" in the game. "But we met at my house and said, 'We can't let DFRC fold.' "
The board saw Glenn as DFRC's lifeline. Glenn put considerable thought and prayer into the board's offer to become DFRC executive director before accepting, he said, over other, more lucrative opportunities.
"He understood. He was raised with the DFRC," Keller said. "He had all the experience, all the tools.
"When he took over, it was just like this spark. He's so emotional, and he cares so deeply, and that's exactly what we needed."
Keller has watched in awe, she said, as Glenn has spoken to students about disability awareness. The Glenn she knows is often "smiling ear-to-ear," she said, "with so much passion pouring out of his pores."
In its first 46 years, DFRC raised $3.4 million. In the past 10, it has raised an additional $2.2 million.
In accepting the offer to take over, Glenn remembered his promise to Carpenter.
"DFRC needed someone who understood the family," said Glenn, who passes the credit to its army of volunteers and participants.
St. Elizabeth High School football coach Joe Hemphill, who has directed the game's training camp since the 1980s, said Blue-Gold "got to be too big not to have someone in a leadership role. 'It's not just a football game,' as they say. There are a lot of things to do and an awful lot of volunteers and people involved. Tony's done a fantastic job of pulling that all together and keeping it organized and staying on top of things."
Seven annual fundraising events fill the DFRC agenda, with an auction, three golf tournaments, a 5K run and the "Hollidazzle" fashion show joining the football game.
"It's his life," Hemphill said about Glenn. "He's made Blue-Gold his life, and that's what you have to have."
DFRC provides grants to large groups as well as for something as small as a local stable's horseback-riding program for autistic kids or as simple as the mother of a disabled child needing a specially equipped van.
"Our mission is to raise the money for everybody," said Glenn, who often collaborates with other groups in that quest. "I don't like raising money, so if we do the right thing, the money will come if we honor the process."
'We're all learning' After Glenn became executive director, DFRC dropped the long-standing slogan that was so closely associated with the game: "We Play That They May Learn."
It last appeared on posters, T-shirts, advertisements and other game-related material in 2001.
"Guess what? We're all learning," Glenn said. "When I was doing the research for my doctorate, I found that [Blue-Gold involvement] shows significant change in the high school participants who supposedly don't have the intellectual disability. Their whole life changes. Their whole attitude changes significantly.
"[With the slogan], it was almost like we were saying, 'Aren't we glad that we showed up to help you?' And the bottom line is, now, as soon as I give, I receive. I believe that's why we're here. No matter what we do, all of us are called to give of ourselves. That's the reward we get back, so if you're giving of yourself, you're receiving. That's a truth."
Glenn knows all that from personal experience, gained first on a 1973 practice field and repeated frequently since.
He came out of that initial Blue-Gold meeting with the children whom the game benefits knowing, "We were just people," he said. "It didn't matter what people looked like. We just wanted to have a good time."
Glenn termed that realization "sacred," and his faith in the Blue-Gold game, its cause and effect, have been devout ever since.
He is glad to sing its praises, and Glenn does with all his seemingly limitless energy.
"We're just providing an opportunity for people to come together and learn from each other," Glenn said. "It's an enlightenment of just really caring about each other, and, in that caring and in that giving, we're receiving. Then, everybody's lifted. That's why DFRC's so important."

Friday, June 17, 2011

twin sisters' bond through dance

Kelley Catenacci applies cherry red lipstick to the lips of her sister, Kendra, and colors her cheeks a rosy peach. It's a nice contrast to the glittery blue- and black-striped costumes they're both wearing for the big dance recital at Xavier High School.

The twin sisters from Appleton are the youngest of six children. The bond they share is no different than the closeness felt between most twins. As young girls, the two played school games together — Kelley was the teacher and Kendra was the student. They are not identical — in fact, there are some extraordinary differences between them; Kendra was born with Down syndrome.

"It's always a surprise to people to find out that we're twins," Kelley said. "They always thought that I was the older sister but Kendra is older than me by about a half-hour."

Growing up, Kelley helped her older sister learn to read, talk and walk. Now 20, she's still teaching her through the art of dance. Kelley is the assistant to instructor Marcia Fellows, owner of Marcia's School of Dance in Appleton.

At age 10, their mother, Linda Kay, encouraged the girls to take dance class together through a program initiated by The Arc Fox Cities, an organization that advocates for those with disabilities. The twins and three other young women, also with special needs, have been performing together in the same class since they were little girls.

"When she first said we were going to take dance classes, I wasn't extremely thrilled about it," Kelley said. "I was a tomboy. I liked basketball and softball and to play sports, but my mom wanted us to try it. I was excited to do something that Kendra and I could both do together at the same level."

Fellows marks her 50th anniversary in dance with this recital, which was held June 8 and 9. She said she had no idea what to expect from the audience the first year the girls performed but the reaction they received was beyond words.

"The response was so heartwarming," she said. "We were standing backstage with tears running down our faces."

With half a dozen recitals under their belts, the girls are old pros by now. There are definitely nerves on stage but Kendra said it's worth the applause and cheers from a satisfied crowd.

The prep work is intensive and Kendra watches her sister with fierce determination during a recent rehearsal. She's even added her own flair to some of the dance moves.

"I like to do the jazz better than the hula," Kendra said. "I hate to mess up a lot. I like everything perfect. I don't want to miss any steps."

"I can't remember a Friday when we didn't have dance classes," Kelly said. "These girls in our class — we're all a big family."

Kelley recalls some of the challenges that developed for her when they were children. In elementary school, the sisters were in the same classes and shared the same friends. But when they went away to separate high schools — Kendra to Appleton North and Kelley to Appleton West — Kelley began to notice differences between the two of them.

"There was a little bit of resentment there because she always got extra help from our parents and extra attention," Kelley said. "When she learned to tie her shoes, my parents made a big deal out of it, but I do that all the time."

"As I look at the bigger picture, our family is so thankful to have Kendra and I've learned so much more for having her be my twin sister."

As they've matured, the sisters have grown closer than ever. Last month, they flew to Pennsylvania to visit a sister. It was their first vacation and plane ride together alone. They shop together and still enjoy sports. Kendra is very involved in the Special Olympics — her favorite event is basketball.

"It's hard to think that we don't already know everything about each other," said Kelley, who's impressed with Kendra's work ethic and determination to be a better dancer.

Kelley asks her sister what she likes most about dancing together.

"It's cool," said Kendra, flashing a big thumbs up.

Replied Kelley: "You better say it's cool."

Thursday, June 16, 2011

More People with Down syndrome developing dementia


People with Down's syndrome are living longer than ever before. Since the 1980s their life expectancy has doubled and many now live into their 60s.

But for the estimated 60,000 people with Down's syndrome in the UK this development is coupled with the startling knowledge that people with Down's are significantly more at risk of developing dementia than in the rest of us. Not only that but they also develop it at a much younger age - 30 to 40 years earlier than the general population.

Charlene is just 29 and was diagnosed with dementia six years ago. Her mum has witnessed her change from a fun-loving, karaoke-singing young person to "an old lady". Previously unaware of the high prevalence of dementia in people with Down's, it was a shock for the family to learn that Charlene was developing the disease in her early 20s.

Charlene is unusually young to start developing dementia, but studies do show that the risk increases dramatically with age. By 50, half of people with Down's are at risk of developing dementia, and this, in turn, is presenting a huge burden to families and services.
With an aging Down's population, Diana Kerr, a leading expert in the dual diagnosis at University of Edinburgh, worries that local authorities are not ready to meet the increasing demands of this population - partly because of a false perception that people with Down's don't live long enough.

Often changes in personality are the first sign of dementia, and a diagnosis is crucial for accessing the right services. It also means the family or carers can begin to change their responses and environment to make life more manageable for the person with Down's.

In Bradford, Nicole has Down's syndrome and lives with her sister Jackie. Nicole's changing behaviour is causing the family and her daycare service great strain. At 52 years of age there is a high probability this change in her character is due to the onset of dementia.

Recently has she been allocated a social worker to help begin the diagnostic process with Bradford District Care Trust. Dr Baylis is part of a multi-disciplinary team which will try to diagnose Nicole. She has other health conditions that could mimic dementia-like symptoms, so a clear diagnosis takes some time while other problems are ruled out.

But Diane Kerr insists that many options for carers are not costly and that simply training families and staff "who are supporting people with dementia to get into their world, instead of expecting them to get into our world," could greatly improve the situation for all concerned.

However, the default care option for many people with Down's no longer able to remain at home is to be placed in a care home for the elderly. Diana Kerr's findings warn that this is generally not the best solution. It may be cheaper than specialist dementia care for those with a learning disability, but there is often a lack of understanding among staff about the unique care needs involved. 
Down's syndrome facts
- Around one in every 1000 babies born in the UK will have Down's syndrome.
- There are 60,000 people in the UK with the condition. 
- Although the chance of a baby having Down's syndrome is higher for older mothers, more babies with Down's syndrome are born to younger women. 
- Down's syndrome is caused by the presence of an extra chromosome in a baby's cells. It occurs by chance at conception and is irreversible. 
- Down's syndrome is not a disease. People with Down's syndrome are not ill and do not "suffer" from the condition.
- People with the syndrome will have a degree of learning difficulty. However, most people with Down's syndrome will walk and talk and many will read and write, go to ordinary schools and lead fulfilling, semi-independent lives.
- Today the average life expectancy for a person with Down's syndrome is between 50 and 60. A considerable number of people with Down's syndrome live into their 60's.

Information by The Down's Syndrome Association
For Elaine in Cardiff this is something that she worries about daily. She cared for her daughter Mandy until dementia rapidly took hold in her 40s, when the burden on Elaine became too great. She ended up in hospital and Mandy was placed in a local care home.

Elaine visits the care home daily, and pushes to make sure that Mandy receives as much support as she can get. Where she thinks there is a shortfall in the available support, Elaine tries to fill it herself - such as trips to the physiotherapist so Mandy can stand for just a short time every week. Nationally, there are few facilities that cater specifically for those with Down's syndrome and dementia. As more and more people develop dementia, experts warn that, due to a lack of resources, more will end up in homes for the elderly, like Mandy.

While families and services provide varied support to people with Down's syndrome, scientists at Cambridge University are seeking treatments that could prevent future generations getting dementia at all. Professor Tony Holland has recently received funding from the Medical Research Council for a four-year study into a protein called amyloid.
'If we do not do something about the needs of people with Down's as they get older and have developed dementia, they will go back into the institutions that we have spent the last 20, 30 years trying to get them out of.'
People with Down's have unusually high levels of amyloid in the brain, and Professor Holland wants to find out if this is the driving force behind dementia in those with Down's syndrome.

If the study concludes that this protein is the key factor, the next step will be to find treatments that reduce the amount of amyloid being deposited in the brain - and thus attempt to prevent the onset of dementia in the Down's population.

Furthermore, it might offer key insights into the role of amyloid in Alzheimer's disease in the general population.

However until a medical breakthrough can defeat dementia, Diana Kerr fears that recent improvements in quality of life for people with Down's could quickly regress.

"If we do not do something about the needs of people with Down's as they get older and have developed dementia, they will go back into the institutions that we have spent the last 20, 30 years trying to get them out of - long-stay units where they are left in a bed, where they can restrain people with chemicals so they don't have to tie them down.

"And we've gone back 30 years. You know that thing about the mark of a civilised society is the way we support vulnerable people? Well, that would be a pretty big indictment."

Airline turns away girl because she has DS


A girl of 12 was refused a plane ticket by British Airways staff because she has Down’s syndrome.
The mother of Alice Saunders was stunned when she was told her daughter could not fly unaccompanied as it was the company’s policy not to accept passengers with Down's travelling alone.

Heather Saunders, 49, had phoned the airline to book Alice a flight from Gatwick to Glasgow.

Heather said: ‘I explained I wanted her to travel as an unaccompanied minor, she was 12 years old, she had Down’s syndrome and was very independent.

‘The woman said, “Our policy says we don’t take children with Down's syndrome”. When asked why, the BA customer service agent responded: ‘Because we’ve had problems in the past.’
Mrs Saunders added: ‘They advise you let them know of any additional needs. I said, “What if I hadn’t told you?”

‘She said they would have turned her down when she arrived because she’s got Down’s syndrome.’
Asked what the position would be if  the passenger were a child on the autistic spectrum

Alice, who planned to go to Glasgow to visit her aunt, attends a mainstream school, reads as well as an average 12-year-old, and regularly goes away with church and Guide groups.

She lives with her parents and three older siblings in Littlehampton, West Sussex.

Mrs Saunders said: ‘We didn’t know Alice had Down’s syndrome before she was born.

‘Our expectation has always been she would do what her siblings have done – with extra support. Alice knows she has Down’s. She’s very proud of the fact.

‘We’ve never had any problem with discrimination before.’

She added: ‘I was very cross after speaking with British Airways and I got crosser afterwards.

‘It was discrimination against people with a disability but more worryingly people with a specific disability. BA should be better informed.

‘This is 2011. Most of the world has moved on in terms of their treatment of people with learning disabilities. People with Down’s syndrome go to mainstream school, college, they live independently, they hold down jobs but, it would seem, cannot travel independently with British Airways.’

Carole Boyes, chief executive of the Down’s Syndrome Association, said she was surprised to learn of BA’s behaviour.

She said: ‘I couldn’t understand it. It seemed very strange.’

A BA spokesman said it was not company policy to refuse solo flyers with Down’s syndrome.

She added: ‘We will carry any child over five years old as an unaccompanied minor provided they can go to the toilet unassisted, feed themselves, and behave in a socially acceptable manner.

‘This includes children who have Down’s syndrome and other additional needs.

‘We apologise unreservedly for the upset caused to Mrs Saunders and her daughter. Our customer service agent made a mistake and we will ensure this is rectified.

‘We will be happy to accept Mrs Saunders’ daughter as an unaccompanied minor.

We have offered Mrs Saunders two return flight tickets as an apology,’ she added.

Urge your U.S. Representative and Senators to reject Medicaid cuts.

From the NDSC:

Call to Action
Urge your U.S. Representative and  Senators to reject Medicaid cuts.
Call your U.S. Senators and Representative Toll Free today at 1-866-922-4970

Medicaid funds virtually ALL adult services including long term support services that enable people with disabilities to live and work independently in the community.  Medicaid also funds services for children in many states. These services can include respite care, after-school services and other in-home support services.

Under any plan in which there are large reductions in federal spending on Medicaid the burden of paying for services would fall to the states that would be likely be forced not only to eliminate services but to deny new applicants.

NDSC believes that Medicaid, in its current form, desperately needs reform and we focus a lot of our efforts on changing the law so that it can better meet the needs of people with disabilities and reduce the amount of Medicaid spending.  One of the ways in which this can happen is enabling families to control the financial resources, through a fiscal intermediary and give families significant decision making power in getting the services their child needs.  However, drastic cuts to the program with no significant reform efforts will only hurt people with disabilities.
Action Needed

Congress is debating how to balance the budget -- and they need to hear from you. Reducing the deficit is important, but the approach must be fair and balanced. We should not balance the budget on the backs of individuals with disabilities-- those who can least afford to bear it.

The message that Senators and Representatives need to hear now is "DON'T CUT MEDICAID." Cuts to this vital program will only shift costs to states and transfer the burden to people with disabilities and seniors who depend on the program for long-term services and supports.
What Should You Say?

• Please reject Medicaid cuts in any form.
• Please oppose any proposals that include or will lead to deep spending cuts or restructuring Medicaid.

the 5K Fun Run and Dash for Down Syndrome

from BarringtonPatch:

When Nancy Gianni, the founder of Down Syndrome awareness center Gigi’s Playhouse and her busy team of volunteers first organized the 5k Fun Run and Dash for Down Syndrome in 2003, they had no idea of the success it would lead to.

“This keeps getting bigger every year,” an energized and excited Gianni said over the microphone from the main stage to the cheering volunteers, walkers, runners and dashers that packed the parking lots of the South Barrington’s Arboretum on Sunday, June 12..  “We have more than 2,200 participants this year, and that is awesome; but let’s try for 3,000 (participants) next year!”

If the cheering from the audience was any indication, than three thousand walkers and runners in next year’s event sounds about right.

“We are incorporating five different Playhouses from all around the Chicagoland area into this event,” Jenni Von Tobel executive director for Gigi’s Playhouse said of just some of the different walking teams that came out in support of Down syndrome awareness.  “And all the money we raise goes straight into programming.”  

The funds from the eighth annual event will not only help support the continued growth of the different Playhouses in operation, but also the 26 different therapeutic and educational programs that is offered to children with Down Syndrome at each Playhouse location.

“The proceeds will help our reading program and the newly piloted math program,” Gianni said.  “We provide one-on-one tutoring in reading and math, our two biggest programs, and that really helps the kids in school.”

Gigi’s Playhouse, which first began in Hoffman Estates, has seen some exciting growth since its inception in Gianni’s basement eight years ago.  Not only did they begin an annual event that brings tremendous support from the community and local businesses to help the center’s fight for awareness of Down Syndrome, but the Playhouse has grown to nine locations scattered throughout the Illinois and even the United States. Gianni says there is even more growth on the horizon.

“We are going international this year,” Gianni said.  “Our tenth location will open in Mexico.”
Both Gianni and Von Tobel credit the growth of the event, and the various Gigi’s Playhouses, to the amazing effort from the community.

“Volunteers are at the heart of what we do,” Von Tobel said of the more than 200 volunteers that work with the different programs in the Chicagoland area.  “We had about 125 volunteers that have been here since 5:30 this morning.”

“The volunteers have done everything, and we couldn’t have done this event without them,” Gianni said agreeing with Von Tobel.  “This event has been fantastic and everything went off without any issues.”
The inspiration for the 5k Fun Run came from a mother that hoped to enter a marathon race with her daughter, who is afflicted with Down Syndrome.  but was unsure if she would be able to.  Gigi’s Playhouse helped make that dream come true for the mother by instilling self-esteem and easing some of the fears associated with Down Syndrome.  Gianni and Gigi’s Playhouse decided to host the 5k run that has now become an annual event.  

“Our kids can walk; they can run; they can do anything,” says Gianni, who knows a little something about being inspired; after all her daughter Gigi has the genetic disease and is the inspiration behind the Playhouse.  “So we decided to have this walk to show people that our kids can do everything other kids can do.”

Perhaps it seems that one of the most important things children with Down Syndrome can do, is inspire.  They have inspired a Playhouse, an event and now a community to action.

Wednesday, June 15, 2011

Sarah Palin's complete letter to her family regarding Trig

Sarah Palin imagined God talking to her in a deeply touching email she wrote two weeks before her fifth child, Trig, was born with Down syndrome. The e-mail was released June 13th 2011.

The following is Sarah Palin's complete letter to her family regarding Trig:

To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):

I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be happy and healthy, and I've answered them because Ionly want the best for you!

I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up. Though another girl would be so nice, you didn't think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!

Then, I put the idea in your hearts that his name should be "Trig", because it's so fitting, with two Norse meanings: "True" and "Brave Victory". You also have a Bristol Bay relative with that name, so I knew it would be best for you!

Then, I let Trig's mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news - that way Piper wouldn't have so long to wait and count down so many days - just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift? (Or the way the Palins look forward to birthday celebrations that go on for three, four days... you all really like cake .) I know you, I knew you'd be better off with just a short time to wait!

Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for. At first the news seemed unreal and sad and confusing . But I gave Trig' s mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!

I've given Trig's mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that. I'll give all of you the same happy anticipation and strength to deal with Trig's challenges, but I won't impose on you...

I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig's life a great one.

This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters . The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect". You will grow and be blessed with greater understanding that will be born along with Trig.

Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal his mom's heart just like Track, Bristol, Willow and Piper did. And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.

Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it "Down's Syndrome", and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!

Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!

Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I'm giving to the Palin family, and the greater Alaska family. Many people won't understand... and I understand that. Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. (But tell me, what do you earthlings consider "perfect" or even "normal" anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as "perfect" on t.v.? Have you noticed I make `em all shapes and sizes? Believe me ,, there is no "perfect"!)

Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.

I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "My ways are not your ways, my thoughts are not your thoughts... for as the heavens are higher than the earth, my ways are higher than yours!"

I wrote that all down for you in the Good Book ! Look it up! You claim that you believe me - now it's time to live out that belief!

Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won't give you anything you can't handle. I am answering your prayers. Trig can't wait to meet you. I'm giving you ONLY THE BEST!

Trig's Creator , Your Heavenly Father

Cathy McMorris Rodgers' kind words to Sarah Palin


When Sarah Palin’s son Trig was born with Down syndrome, she received an outpouring of support from those affected by the disorder, recently released emails from Palin’s time as Alaska governor show.

In the days following Trig Palin’s birth in April 2008, emails poured in from across the country from parents of those with Down syndrome who offered kind words and encouragement.

At least one came from a fellow politician. U.S. Rep. Cathy McMorris Rodgers, R-Wash, who also has a young son with Down syndrome wrote, “I believe I have only seen a glimpse of the positive impact he will have on my life as well as this world.”

“The hardest part is hearing the news and getting your arms around a new reality,” wrote McMorris Rodgers, who offered to talk with Palin. “However, you quickly develop new hopes and dreams for your son.”

Most of the messages, however, came from everyday parents as far away as Florida, Texas, Ohio and Mississippi who heard about Palin’s new connection to the disability community on the radio or through newspaper articles.

“We are blessed to have a 15-year-old son with Down (syndrome) and I can’t imagine what life would be like without him,” wrote Brenda Kopp of Carol Stream, Ill. “Enjoy a new journey of which many of us are a part.”

In another note, Kelly and Jennifer Sweeter from Oklahoma City, Okla. told Palin about their 11-year-old with Down syndrome.

“Although Trig may have special challenges, he will surely bless your life with love and laughter,” they wrote.

Improving access to parks and public areas for people with disabilities

As part of President Barack Obama's America's Great Outdoors Initiative, the Federal Interagency Council on Outdoor Recreation (FICOR) works to increase public enjoyment and recreational use of federal lands. FICOR is also finding ways to improve access to our parks, refuges, and other public lands and shores for persons with disabilities. Read about the Access Pass, a free, lifetime pass that provides access to more than 2,000 recreation sites.

The Access Pass admits pass owner/s and passengers in a non-commercial vehicle at per-vehicle fee areas and pass owner + 3 adults, not to exceed 4 adults, where per-person fees are charged. (Children under 16 are always admitted free.) Note: Photo identification will be requested to verify pass ownership.

At many sites the Access Pass provides the pass owner a discount on Expanded Amenity Fees (such as camping, swimming, boat launching, and guided tours).

Diagnosing Dementia In Adults With Down Syndrome


A unique brain scanner is used to allow the assessment of amyloid plaques and neurofibrillary tangles- the hallmarks of Alzheimer's disease- in adults with Down syndrome. This finding may offer a new clinical tool to help diagnose dementia in adults with Down syndrome.

Adults with this disorder develop Alzheimer's-like plaque and tangle deposits early, often before the age of 40. Previously, the only way to physically detect these abnormal proteins in this population was through an autopsy.

Over the last decade, methods for identifying and imaging the neuropathology of Alzheimer's disease in living patients have been developed. UCLA researchers have created a chemical marker called FDDNP that binds to both plaque and tangle deposits, which can then be viewed through a positron emission tomography (PET) brain scan, providing a "window into the brain." Using this method, researchers are able to pinpoint where in the brain these abnormal protein deposits are accumulating.

"Early detection can also lead to earlier interventions and treatments, often before symptoms begin."
For this study, researchers intravenously administered FDDNP and then performed PET brain scans on 19 non-demented adults with Down syndrome (average age 37), 10 healthy controls (average age 43) and 10 patients with Alzheimer's disease (average age 66).

The results showed significantly higher binding levels of FDDNP in participants with Down syndrome in all brain regions, when compared to healthy controls. Compared with Alzheimer's disease patients, subjects with Down syndrome showed significantly higher binding levels in the parietal and frontal regions — areas involved in memory, behavior and reasoning.

"The higher level of plaques and tangles may be reflecting the early and extensive accumulation of these deposits seen in individuals with Down syndrome," Dr. Small said.

The researchers also discovered significant associations between increased age in those with Down syndrome and higher FDDNP binding values in the parietal, lateral temporal and frontal regions.

"This is one of the first times we've been able to visualize the neuropathology occurring in the living brains of adults with Down syndrome," study author Dr. Jorge R. Barrio, a professor of molecular and medical pharmacology at the David Geffen School of Medicine at UCLA who holds UCLA's Plott Chair in Gerontology, was quoted as saying.

"The age-related patterns and regional distribution of the plaques and tangles were consistent with the types of deposits that could only be identified previously through an autopsy."
The areas of accumulation were consistent with earlier autopsy study findings, which had shown that while plaque and tangle pathologies are the same in both Down syndrome and Alzheimer's disease, the deposit patterns are different.

Autopsy studies have also shown that all adults with Down syndrome eventually develop these accumulations of amyloid plaques and tau tangles. But rather than experiencing memory decline and other cognitive losses, as is common with Alzheimer's, aging Down syndrome patients tend to develop behavioral problems.

"We found that the behavioral changes in the subjects with Down syndrome correlated with neurological changes in related areas of the brain consistent with the level of FDDNP binding levels to the abnormal proteins," Dr. Small said.

Wednesday, June 8, 2011

Dr. George T. Capone featured at Down syndrome conference


Down Syndrome research scientist Dr. George T. Capone will be featured at a special full-day conference at The Kennedy-Willis Center at Pathfinder Village in Edmeston, NY on Friday, June 10. The conference, "Medical and Behavioral Issues in Down Syndrome" is open to parents, educators and professionals who work with people with developmental disabilities.

A printable registration form and more information on Capone's conference is available at; a registration fee of $70 will be charged and includes conference materials, refreshments and lunch. For more information, contact Bonnie Laugen, director of the Kennedy-Willis Center, at 965-8377, ext. 154/112, or e-mail

"For 15 years, people have turned to the Kennedy-Willis Center for the latest research information on Down syndrome," Laugen said in a media release. "It is very exciting to have this opportunity to share Dr. Capone's expertise with the community and learn about baseline research that will shape our understanding and methods of care for years to come."

Capone is one of the country's preeminent research scientists in Down syndrome, according to the release. Capone is the head of the Down syndrome clinic at the Kennedy Krieger Institute in Baltimore and has conducted research that explores the neurobiologic basis of cognitive impairment, behavioral and psychiatric disorders that may be associated with the chromosomal condition. He and his colleagues have been published in the Journal of Developmental & Behavioral Pediatrics, Journal of the Neurological Sciences and the American Journal of Medical Genetics.

Capone also is an attending physician at KKI and an associate professor of pediatrics at the Johns Hopkins University School of Medicine. He attended Wesleyan University and worked as a research assistant at the Dana Farber Cancer Institute, Boston, before obtaining his M.D. from the University of Connecticut in 1983.

The conference is part of the 15th anniversary celebration for the Kennedy-Willis Center on Down Syndrome, Pathfinder Village's outreach and education initiative. The center provides counseling and training for direct care staff, medical professionals and families who care for people who have Down syndrome and other disabilities.

Founded in 1980, Pathfinder Village is a privately funded, nonprofit, residential community for children and adults who have Down syndrome. For more information, visit or, or visit the Pathfinder Facebook page.