Wednesday, October 31, 2012

NIH establishes patient registry for people with Down syndrome

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."

Tuesday, October 30, 2012

Ann Coulter on using the "r-word": "I was not referring to someone with Down syndrome"

On Friday, the always controversial Ann Coulter refused to apologize for calling President Barack Obama "the retard" on Twitter.
A determined Piers Morgan tried his best to pull an apology from the defiant Coulter who insisted she had nothing to apologize for since her remark was not directed at the community of mentally disabled individuals who were offended by the tweet. "I was not referring to someone with Down syndrome," said Coulter. "I was referring to the president of the United States."
"I didn't call the president a Down syndrome child," continued Coulter. "I used the word retard the same way people use idiot, cretin, moron and the rest of them which were all once technical terms and I had it with the language police."
Watch the clip and listen to the interview as Coulter explains why the "r-word" is not the same as the "n-word."

by Emanuella Grinberg, CNN - News Channel 5 WPTV NBC:
Conservative commentator Ann Coulter stood by her decision to call President Barack Obama the "r word" in a tweet, and questioned whether the word is indeed offensive.
"Maybe [Vice President Joe] Biden should be upset with me calling the president a retard but not an actually disabled person," she said Friday in an interview on CNN's "Piers Morgan Tonight."
Coulter was addressing a tweet she sent following the third presidential debate between Obama and GOP nominee Mitt Romney.
"I highly approve of Romney's decision to be kind and gentle to the retard," she posted to the social networking site.
She said in the interview she chose the word "because it's a synonym for 'loser.' " She professed to have used the word since.
Among the reaction to her post were a slew of critical tweets, as well as a blog post addressed to her by Special Olympic athlete John Franklin Stephens that went viral.
"Come on Ms. Coulter, you aren't dumb and you aren't shallow. So why are you continually using a word like the R-word as an insult?" he wrote in the post. "I'm a 30 year old man with Down syndrome who has struggled with the public's perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night."
Stephens appeared separately on "Piers Morgan Tonight" Friday.
"The word retard is offensive, and that I should not be a symbol for someone who is dumb and shallow," he said. "If they wanted to use me as a symbol, use me as a symbol for someone who fights adversity."
Coulter said "language police" were dictating what words should and should not be used, and denied the term was offensive at all.
"It's offensive according to whom? Moron, idiot, cretin, imbecile, these were exactly like retard, once technical terms to describe people with mental disabilities," she said. "Changing the word doesn't change the definition. I was not referring to someone with Down syndrome. I was referring to the president of the United States."
In addition, those who are offended by the word have little ground, she suggested.
"No disabled people are saying it, the spokesmen for the disabled," she said.
Pressed on whether the word bore a stigma similar to another offensive word -- the n word -- she said, "I wouldn't use the n word because it's a curse word."
Read more:

Monday, October 29, 2012

Special Needs Requires Special Disaster Planning!

by Debra Forand from Voices for Down Syndrome:
Special Needs Require a Special Disaster plan.  It is your responsibility to establish a family emergency plan. Local emergency response teams get busy during a large disaster event such as a hurricane.  Most state and local officials encourage citizens to be self sustained for at least the first 72 hoursFor those family’s with a special need family member this requires additional planning.  Waiting for the storm or emergency to be knocking on your door is not the time to begin your preparations.  Be smart and plan ahead.  An emergency can strike at any time and any place. You do not need to be in a state of turmoil when disaster strikes.

Calmness and confidence can be yours when you properly prepare yourself ahead of time.

During the day I spend a lot of my time advocating Disaster Preparedness, as a response coordinator.  I have seen what turmoil people go through who did not prepare.  As a parent of a special needs child I have become aware of what is needed to prepare for an emergency with a special needs family member.

I want to quickly share with you some quick tips and ideas that will help you create your family emergency plan.

If your child or family member is on medication this is one of the biggest priorities.  Be sure you have a list of all medications, dosage, and the Dr who prescribed it.  If an evacuation is ordered you will need to have extra medication available. Most pharmacies will allow an early refill on medication with the onset of a large scale disaster such as a Hurricane.  Don’t wait on getting these filled.

Have all paper work needed ready to go in a grab and go box. All of us that have special needs family members know how important accurate record keeping is for many different reasons.  Your disaster plan should include insurance information, policy numbers, and how to contact them. From IEP’s to medical some of the information just can not be lost. There are small file boxes that you can get at your local stores that are inexpensive and small enough to grab and go.

For children with special needs keep in mind that most of these children weather it be Down syndrome of other wise are routine orientated. Having an emergency or having to evacuate is a huge disrupt to their routines. Be sure to have favorite items, toys, books, ect. I find portable DVD players are a god send. Be sure to have plenty of batteries.  If there is a favorite calming snack that they like be sure to have plenty on hand. Be prepared your self to expect behavior changes.

Each family member should have a go bag with these comfort items in them.  For my son I have two. One is for necessity items, such as food, medication, clothes. The other one is for his comfort items. Music, DVD player, his favorite toys and blankets. I use old school backpacks and lunch boxes for his grab and go bag. This gives him a sense of security because they are familiar items.

For those family members that have devices and equipment be sure you have the information for those items and if you have spare parts be sure to pack them as well. At least have them available to be able to pack and go at a moments notice.

Most states have a Special needs Registry.
For Florida there is the Florida Statue 252.355Registration of disabled citizens; notice
(1) In order to meet the special needs of persons who would need assistance during evacuations and sheltering because of physical and mental handicaps, each local emergency management agency in the state shall maintain a registry of disabled persons located within the jurisdiction of the local agency. The registration shall identify those persons in need of assistance and plan for resource allocation to meet those identified needs.
Individuals are eligible to be registered with the Special Needs Registry if they are 60 years of age or older, frail, elderly, medically needy, and/or disabled and are not served in or by a residential facility program. Eligible clients are required to complete and sign the Special Needs Registry Application as well as the HIPAA Disclosure of Information andHIPAA Privacy Act forms before they will be placed on the registry.
You should try and seek help or shelter from friends, neighbors, or family in a hurricane or other disaster. Public shelters should be a last resort for those who have no other choice If you cannot drive yourself, nor have any family, friends or neighbors who can take you to a shelter, you are encouraged to register for this service.

Most Counties have available this service. Contact your local Community Elder Affairs, Red Cross, or Emergency Management office to find out how to register.
Back in 2004 I had my first experience of evacuation with a special needs child in the onset of Hurricane Ivan.  Because of my situation at the time I had no choice but to go to the local special needs shelter. My son was on a nebulizer at the time and had to have breathing treatments often. He was only two. I learned a lot on what I should and should not do in the event of an emergency. I knew I had to plan better and be more prepared. Having the experience I have obtained from my job has helped us as a family be more prepared. If I could change one thing and do it different I would have to say be prepared ahead of time.
Florida Division of Emergency Preparedness is Florida’s one stop for all your emergency needs before, during and after a storm or event.

Some other great resources to view are:

Sunday, October 28, 2012

My Special Child: Man Proves Life with Down Syndrome Can be Fulfilling

by Abby Eden from Fox4KC:
In America, the abortion rate for a prenatal diagnosis of Down Syndrome has dropped to 67 percent, according to a study released earlier this year by the National Institute of Health. Yet many people argue that 67 percent is still too high.
In honor of Down Syndrome month, this “My Special Child” report, reminds us that many people with Down Syndrome can complete high school, attend college and be gainfully employed.
Though Lee Jones has Down Syndrome he’s been making great accomplishments since he was just a little boy. It’s a message he wants these medical students to hear.
“Everyone, whether they have a disability or not have the right to have their own dreams, just because a person has a disability doesn’t lessen the importance of their dreams,” said Jones.
Lee learned to read at the age of three, was developing athletically by kindergarten, he graduated from high school, then from college with a bachelors degree. Today Lee lives on his own and works two jobs, including one at the Kauffman Foundation.
“I pass out mail, I know people really well so, I interact with them when I do that, then I do photocopying, mailing, scanning,” Jones explained.
Lee attributes his accomplishments to his personal determination and realistic goal setting. He also attributes his parents’ relentless commitment to his learning which was done with many small steps.
“I did my own laundry when I was in middle school at home,” he said.
Many times it was Lee who was setting the goals, like learning to drive and learning to scuba dive, and yes, it was much harder for Lee.
“We were studying for an algebra test in high school and Lee and I were both to about the breaking point, and he said ‘Mom don’t you realize this is hard for me?’ And I said sure,” Carolyn Jones, Lee’s mother, said.
It may have taken Lee longer to learn, but today, he’s far from being a burden on society.  He works, he volunteers, and he is teaching the rest of us what people with down syndrome CAN accomplish.
October is Down syndrome month. For more information, resources and success stories visit the National Down Syndrome Society’s website at
Find me on Facebook:  Abby Eden Fox 4
Follow me on Twitter:  @AbbyEden
Email me:

Saturday, October 27, 2012

Woman with Down Syndrome and breast cancer meets Bieber

from WFMY News 2:
28-year-old Jessica Hickman, who has both Down syndrome and breast cancer, had her wish come true when she got to meet Justin Bieber before his concert in Minneapolis

Friday, October 26, 2012

siblings Josh and Grace share a message about love and respect

Josh and Grace Curley created a slide show about love between siblings and respect for all people that has gone viral. Over a million people have viewed, liked, & shared the slide show on Facebook and imgur. This is a great example of the power of advocacy through something as simple as 18 pictures with words printed on notecards. Thank you Josh and Grace!

Text from the notecards on the slides:
  • My names Josh and I'm 18 years old!
  • This is my best friend and big sister Grace.
  • Some say I have a disability...
  • Grace says I have a ability that may be jealous of...
  • the ability to love unconditionally, be non judgemental,
  • and I'm not afraid to be me :-)
  • I have Down syndrome
  • I have a extra chromosome.
  • Grace says "Real friends down count chromosomes"
  • People sometimes use really mean words but ALOT of people love me
  • These mean words Hurt but don't describe me at all
  • I am... Silly
  • Funny
  • Loving
  • Helpful
  • Smart
  • And I have feelings just like you and your friends
  • I'll give you a chance, if you give me one too.

Thursday, October 25, 2012

Just Like You–Down Syndrome: A Big Message in 13 Minutes

By Abby Eden of Fox 4 KC:
The movie is called Just Like You-Down Syndrome. It’s the third in a series of Just Like You Films, made in the metro that aims to educate others about a unique situation. The latest focuses on Down Syndrome.
Hundreds of fans lined up Monday night, waiting to see the stars of the movie. What emerged weren’t the pouting faces of starlets, but the glowing faces of teenagers on a mission.
“I just wanted to encourage others to be friends with someone who has Down Syndrome because it really is a life-changing experience,” said Bobby Engen.
These best friends wanted to tell other people what it’s like to be a teenager with Down Syndrome. They’re spreading the message with the help of Just Like You films and the Down Syndrome Guild.
“The mission of Just Like You Films is to educate kids and other kids about unique circumstances that they may not otherwise know about,” said Jen Greenstreet, owner of Just Like You Films.
Their 13-minute film is expected to be shown across the country, even the world, and they’re enjoying their first night as movie stars.
“It’s amazing,” said Elyssa Schmitz.
It all started with the story of six best friends who decided to tell the world how much they’re “just like you”.  The funding for the movie came from private donations. It took two years to make.

Wednesday, October 24, 2012

Man with Down syndrome responds to Ann Coulter’s ‘retard’ insult

by John Franklin Stephens from the Speical Olympics Blog:
The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night’s Presidential debate.

Dear Ann Coulter,
Come on Ms. Coulter, you aren’t dumb and you aren’t shallow.  So why are you continually using a word like the R-word as an insult?
I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact it has taken me all day to figure out how to respond to your use of the R-word last night.
I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.
Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.
Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.
Because, Ms. Coulter, that is who we are – and much, much more.
After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me.  You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.
I have to wonder if you considered other hateful words but recoiled from the backlash.
Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.
No one overcomes more than we do and still loves life so much.
Come join us someday at Special Olympics.  See if you can walk away with your heart unchanged.

A friend you haven’t made yet,  
John Franklin Stephens
Global Messenger
Special Olympics Virginia

EDITOR’S NOTE: John has previously written powerful opinion pieces on the R-word. Read one here.



WHO:            Delaware Governor Jack Markell, NGA Chair
                      South Dakota Governor Dennis Daugaard
WHAT:          As part of Gov. Markell’s A Better Bottom Line: Employing People with Disabilities Chair’s Initiative, this roundtable will gather experts from government, academia, and business to frame the issues around employment for individuals with disabilities. The roundtable discussion will identify promising state and business practices and develop a set of state policy options.   

WHERE:         Hall of the States Room 283/285
                      444 N Capitol Street NW
                      Washington, D.C. 

WHEN:           Wednesday, October 24, 2012

                      Sessions open to the media include:

                      8:30 a.m.                    Registration 

9:00 a.m.                    Welcome by Dan Crippen, NGA Executive Director
                      9:05 a.m.                  Opening Remarks by Gov. Markell and Gov.

                      9:30 - 11 a.m.             Round Robin: Introductions and Quick Fire Question

NOTE:           All media planning to attend must register RSVP to the NGA’s Office of Communications at 202-624-5301. Requests for individual interviews with Gov. Markell should also be directed to this number.         
Founded in 1908, the National Governors Association (NGA) is the collective voice of the nation’s governors and one of Washington, D.C.’s most respected public policy organizations. Its members are the governors of the 55 states, territories and commonwealths. NGA provides governors and their senior staff members with services that range from representing states on Capitol Hill and before the Administration on key federal issues to developing and implementing innovative solutions to public policy challenges through the NGA Center for Best Practices. For more information, visit

Tuesday, October 23, 2012

Gobal Down Syndrome Foundation 2012 Be Beautiful Be Yourself Raises $1.5 Million, Honors Jamie Foxx and Luke Zimmerman

Quincy Jones, Natasha Bedingfield Star at Benefit for Linda Crnic Institute for Down Syndrome
from Herald Online:
Over $1.5 million was raised at the Global Down Syndrome Foundation’s 2012 Be Beautiful Be Yourself Fashion Show on Saturday, Oct. 13, at the Sheraton Downtown Denver Hotel to benefit the Linda Crnic Institute for Down Syndrome. The gala was sold out, with 1,200 people in attendance, including football legends Pat and Annabel Bowlen, and John and Paige Elway.This year, the annual event honored Academy Award-winning actor Jamie Foxx and “The Secret Life of the American Teenager” TV star Luke Zimmerman with the 2012 Quincy Jones Exceptional Advocacy Awards. Quincy Jones, the organization’s International Spokesman, presented the award to Foxx, while Foxx’s sister, DeOndra Dixon, who is the foundation’s 2011 Ambassador, presented the award to Zimmerman.The Be Beautiful Be Yourself Fashion Show featured the foundation’s 2012 Ambassador, 6-year-old Samantha Marcia Stevens of Massachusetts, as well as 29 other guest models who happen to have Down syndrome. They strutted the runway with celebrity escorts, including actress Virginia Williams, Denver Nuggets star players Andre Iguodala and Danilo Gallinari, and Colorado Rapids forward Conor Casey. Kim Christiansen of 9News was the evening’s emcee.British singer-songwriter Natasha Bedingfield closed out the evening with a concert that featured dancing help from the models during her chart-topping hit “Unwritten.”The event’s live auction raised $210,000, with such exclusive offerings as Hyde Park Jewelers’ Kentucky Derby VIP package, an Indianapolis 500 experience with Buzz Calkins, and a dinner with Denver Broncos icons Pat and Annabel Bowlen, and John and Paige Elway.The money raised at the Be Beautiful Be Yourself Fashion Show provides crucial funding for research, medical care, education and advocacy benefiting people with Down syndrome. Because Down syndrome is the least-funded genetic condition by the National Institutes of Health, the research and care provided by the Linda Crnic Institute at the Anschutz Medical Campus in Aurora, and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado rely heavily on private funding.The Be Beautiful Be Yourself Fashion Show is the single largest annual fundraiser benefiting people with Down syndrome.More information about this event and the Global Down Syndrome Foundation is available at

About the Global Down Syndrome Foundation.
The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the US committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show - the single largest annual fundraiser benefiting people with Down syndrome. Programmatically the Foundation organizes and funds many programs and conferences including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

About the Linda Crnic Institute for Down Syndrome
The Linda Crnic Institute for Down Syndrome is the first medical and research institute with the mission to provide the best clinical care to people with Down syndrome, and to eradicate the medical and cognitive ill effects associated with the condition. Established in 2008, the Crnic Institute is a partnership between the University of Colorado School of Medicine, the University of Colorado Boulder, and Children’s Hospital Colorado. Headquartered on the Anschutz Medical Campus in Aurora, the Crnic Institute includes the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado. It partners both locally and globally to provide life-changing research and medical care for individuals with Down syndrome. The Crnic Institute is made possible by the generous support of the Anna and John J. Sie Foundation, and relies on the Global Down Syndrome Foundation for fundraising, education, awareness and government advocacy. It is a research and medical-based organization without political or religious affiliation or intention.

Read more here:

Monday, October 22, 2012

Life Lessons from Lisa

Life Lessons from Lisa

by Tori Spelling from ediTORIal:

Today I am grateful and honored to bring you a second guest blog from my friend Lisa. As you may remember, her son Blake was born with Down Syndrome, so in honor of National Down Syndrome Awareness Month, Lisa has so generously shared the next part of her journey with us. The lessons that she has learned over the past year are not limited to those who might have children with special needs. Everything that Lisa has experienced is something that all of us can relate to, and the deeper understanding of motherhood that she can lay claim to I truly admire. Take it away, Lisa… 

Sometimes in life you have to experience things as opposed to relying on words, opinions or “facts” to get the picture.  Growing up I was always one who had to “learn the hard way” and suffer the consequences of my actions to get the lessons, and I am grateful that this is still the case.  A little boy named Blake rocked my world May 13, 2011 when he was born with Down Syndrome (Read our full story HERE). The last 17 months have literally transformed me as a person and a mother. Not only was I blessed with a baby boy who has a “little something extra” in the chromosome department; I have also become part of an amazing community whose foundation is built on the principals of Support, Inclusion, Respect and Love. I feel the true key to change is education and information, and in honor of Down Syndrome Awareness Month I would like to share five things I have learned in the last year about being a mother of a child with Down Syndrome.

Sunday, October 21, 2012

Life skills for Down syndrome fostered by supportive open employment

by Vicky Manley from Science Network Western Austrialia:

RESEARCH exploring open employment and the transition from school to adulthood for young adults with Down syndrome has won the ‘Three Minute Thesis’ (3MT) competition for an ECU Occupational Therapist.

PhD candidate Ms Kitty-Rose Foley presented the winning 3MT ‘Life after school: there’s room for improvement for young adults with Down syndrome’ about research into transitioning young adults with Down syndrome.
The research examines positive and adverse influences in the transition from school to post-school.
“I was particularly interested in exploring the factors which may influence different outcomes post-school, such as: behaviour, family quality of life, young adults quality of life, functioning in activities of daily living, socio-economic status, gender and living region,” says Ms Foley.
Participating families completed questionnaires over a longitudinal period from 2004–2011.
Part one of the questionnaire pertained to a young person’s characteristics and part two, family characteristics.
The research examined factors associated with different day occupations such as open employment, training, sheltered employment and/or day recreational programs.
According to Ms Foley, the emerging results suggest that families of young people who are attending supported open employment [post school] are achieving better outcomes in terms of family quality of life.
Interestingly open employment even for a small amount of time per day achieved better outcomes.
Behaviour patterns improved in those participating in open employment as opposed to those who mainly attended day recreation programs—whose behaviour problems showed an increase.
“This could be due to modelling appropriate behaviours from typically developing colleagues or perhaps these young people are more focused on their day to day tasks,” says Ms Foley.
The findings also indicate that intellectually disabled young adults were rarely consulted on decisions about their future—irrespective of their individual abilities, interests and capabilities.
The research concluded that a young person functioning in activities of daily life (self care, communication, community skills) and good family support were associated with participating in open employment and better quality family life.
“This provides important information to guide services and policy when targeting the intervention for young people with Down syndrome,” says Ms Foley.
Ms Foley is with the School of Exercise and Health Sciences at ECU and is based at the Telethon Institute for Child Health Research in Subiaco working as an OT for children with a range of disabilities.
The competition allows researchers three minutes to communicate their thesis and Ms Foley said she was lucky to win the Edith Cowan University (ECU) finals. 

Saturday, October 20, 2012

Groups build a new bridge: Down Syndrome of Louisville expands services to Southern Indiana

by Mark W. Leach from Courier-Journal:
Last year, Down Syndrome of Louisville (DSL) finished raising $3.8 million for the construction and opening of its first-in-the-nation, purpose-built Lifelong Learning Center on South Hurstbourne Parkway. Without the support and enthusiasm of this community, DSL’s dream would not have been possible. But little did we know that the Louisville campus would be just the first Lifelong Learning Center we would open.
At the same time DSL was planning its grand opening, it was also merging with the Down Syndrome Support Association of Southern Indiana (DSSASI). DSSASI had a proud tradition of serving our families in Southern Indiana for many years. Through a generous grant from the Ogle Foundation, DSL and DSSASI decided that uniting made better sense for serving both sides of the Ohio River.
Over the past year, the two groups have continued to grow together, most recently with the combined annual community walk held on Oct. 6 at Waterfront Park in celebration of October being National Down Syndrome Awareness Month. The walk was bigger and exceeded budget through the combined effort, when before there had been two separate walks on different weekends.

Friday, October 19, 2012

Lost boy kept warm by puppies


A 10-year-old boy with Down Syndrome reported missing in Marion County overnight has been found (video below).
The family said Kyle Camp was watching television around 4:30 p.m. Tuesday before he went missing. They searched for him until 7 p.m. and then called police.
Dozens of volunteers and the sheriff's department searched for the boy all night. Officials said at one point, at least 150 volunteers were searching for the boy.
Marion County Sheriff's Department, all surrounding fire departments, and Hackleburg Police assisted in the search.
A State Trooper helicopter was deployed overnight to search for Kyle, and went up again at 8 a.m. Wednesday.
The search encompassed a mile and a half perimeter. Volunteers searched until 5 a.m. and then continued at 7 a.m.
A volunteer searcher said he followed his family dog along a creek in thick brush and found the dog's puppies with the boy around 9:30 a.m. Wednesday.
"I heard the dogs barking again and followed him down there and started hollering for the puppies and I hollered for him and he hollered back. He was in the creek about a half a mile over the ridge," said searcher Jamie Swinney.
Swinney said he volunteered to help because he has kids of his own and that made being part of the reunion even sweeter.
"The main thing was getting him to his dad. That's where I wanted to get him to was to his dad. When I found him I asked if he was alright and he said yeah, he said he just wanted to go home," Swinney said.
Officials said the boy was wet and had no shoes. They think the puppies kept him warm overnight.
As Kyle was being treated for minor scrapes and bruises at a hospital in Hamilton, his brother Chris Bailey stopped to thank the friends and perfect strangers who helped bring Kyle home.
"Thank you, thank you so much. I had people from work, as many people as I could get together. Just thank you, it's amazing we could all come together like this," Bailey said.
"It was amazing how many people came together to look, because we couldn't have gotten it all on our own. It's just amazing the community is that close to each other," Bailey added.
Another rescue searcher said the turnout of volunteers didn't surprise him.
"It actually shows how great the community is. Everybody can pull together and come as one just to make sure one is found, I mean the community is great. I love Hackleburg," Joshua James said.
Kyle was treated for scrapes and bruises at the hospital and is expected to be ok.

WAFF-TV: News, Weather and Sports for Huntsville, ALWAFF-TV: News, Weather and Sports for Huntsville, AL

Surfer mom working to get sport in national Special Olympics

from CBS News:
Special Olympians compete in dozens of sports, but surfing has never been one of them.

But now, Jennifer Rowlette-Reneau's, former champion surfer and mother of a 6-year-old daughter with Down syndrome, is working to get surfing included in the national Special Olympics competition.

In Florida, Reneau started an annual surfing event for kids with Down syndrome, named after her daughter, Riley, called "Smiley Riley's Beach Bash." Its success led Florida's Special Olympics to include surfing, now in its third year.

Reneau's now working to get other states, like California, to hold competitions. If that happens, the national Special Olympics told CBS News the next step is for surfing to become a demonstration sport at a future summer games.
Watch Mark Strassmann's report from Cocoa Beach, Fla., link to the video above.

Thursday, October 18, 2012

Adult Down syndrome center a passion, and ‘a blessing’

Dr. Brian Chicoine of Arlington Heights was among the more than 10,000 runners who ran the Chicago Marathon for charity. But he was the only one to run it for the Adult Down Syndrome Center in Park Ridge.
It was the sixth time Chicoine ran the marathon for the center and over the years he has raised more than $300,000 for its programs. This year alone, he raised $20,000 and money continues to come in.
The Adult Down Syndrome Center is the only one of its kind in the Midwest and is a program offered by Advocate Lutheran General Hospital and its medical group.
Last week, Chicoine and his staff hosted an open house at their newly completed facility, located just west of the hospital.
While the facility has been open since late April, they waited until October, known nationally as Down syndrome awareness month, to open its doors to the public.
What started 20 years ago with Chicoine seeing patients two mornings a week has evolved into a full time center that offers a holistic approach to meeting the medical and psychosocial needs of its clients.
Since its inception, more than 5,000 patients have been served and it now treats 2,000 individuals per year.

Wednesday, October 17, 2012

One Direction's Niall Horan Sends Message to Fan With Down Syndrome

from Celebs:
One Direction's Niall Horan made the day of a 15-year-old girl with Down Syndrome when he sent a special video message her way. Melena Butera loves all the One Direction guys--Niall along with Harry Styles, Louis Tomlinson, Liam Payne and Zayn Malik--but Niall is certainly her favorite, and even moreso now.
According to a report from Nine MSN, Melena's older sister Julianna, who is 20, started a YouTube film campaign to catch the attention of the One Direction singers. Since Melena's birthday is close to the date of their Madison Square Garden concert on December 3rd, she thought why not try to surprise Melena with something wonderful.
Niall made a reciprocal film for Melena.
"[Your film was] absolutely incredible ... You're a massive fan we know,
he One Direction singers. Since Melena's birthday is close to the date of their Madison Square Garden concert on December 3rd, she thought why not try to surprise Melena with something wonderful.
Niall made a reciprocal film for Melena.
"[Your film was] absolutely incredible ... You're a massive fan we know," Niall says to Melena. "All the love from the boys."
So will Melena Butera get to meet Niall Horan and One Direction? That hasn't been confirmed, but it sounds likely because of the way Niall signed off on his video .
"See you soon," he says at the end of the clip.
Do you think Melena will be treated to a meet and greet and concert on behalf of One Direction? Just the film alone made her day--just imagine how excited she'll be if she gets to meet the "What Makes You Beautiful" and "Live While We're Young" singers in person!

Tuesday, October 16, 2012

High school awards homecoming king honors to student with Down syndrome

from KPLC TV:
At a San Diego high school, students are awarding homecoming king honors to a student with Down syndrome.
Although Ivan Mendoza has Down syndrome, that doesn't stop him from being one of the most popular kids on campus and putting a smile on everyone's face. Those qualities are part of the reason his classmates are awarding him homecoming king honors.
"He's so sweet," said a classmate who voted for him. "Even if he doesn't know you, he says hi. He's always talking to people. He's just really nice."
Another classmate said Ivan has one of the most appealing personalities on campus.
"When I see Ivan on campus, he's always outgoing, friendly, and nice," he said.
Once he heard about Ivan being on the homecoming king ballot, one of the school's football players dropped out of the race so that Ivan would be the only one in the running.
"I thought he should have the opportunity to win," said the football player. "So I just told myself I should drop out because I would like for him to win."
Ivan's mother said the gesture from classmates shows he is truly loved.
And it is that love that will make this year's homecoming that much more special.

Monday, October 15, 2012

Optometrist Says 90 Percent of People With Down Syndrome Suffer Eye Diseases

from All
An optometrist, Dr Ogechi Nwokedi, said on Wednesday in Lagos that 90 per cent of people with Down syndrome suffer several eye conditions.
Nwokedi said this at an international seminar entitled: "Unique with a Difference" organised by the Down Syndrome Foundation of Nigeria.
"Most people with Down syndrome are at risk of suffering from eyesight problem.
"The most common ones include astigmatism, cataracts, long-sightedness, myopia, strabismus and refractive errors," she said.
Nwokedi urged parents and caregivers to take their children to eye doctor to prevent loss of sight.
She said that most of the visual problems could be treated easily and effectively with the wearing of eye glasses.
"Occasionally, surgery may, however, be required," she said, stressing that people with Down syndrome deserved and have a right to sight like everybody else.
Nwokedi also stressed the need for people to maintain good hygiene at all times, noting that everybody, able or disabled, has a right to good eye sight and examination.
"Nobody is too disabled to have an eye examination; people living with disabilities have a right to sight like everyone else."

Sunday, October 14, 2012

The Three Types of Down Syndrome

from Home Remedies for you .com:
Human chromosomes have a unique genetic code, which instruct and control the division, function as well as the growth of cells. Under normal circumstances, your cells contain 23 pairs of chromosomes, where one chromosome comes from your dad and the other from your mom. However, at times the cells could have three copies of a particular chromosome, instead of two. People who have three copies of the Chromosome 21 are born with Down syndrome. Other genetic problems occur when the duplicated chromosomes are other than Chromosome 21. Therefore Down syndrome is also commonly known as Trisomy 21.
Not a lot of people are aware of the fact that Down syndrome can be classified into three different kinds. Given below are facts about the three types of Down syndrome –

Standard Trisomy 21 or Nondisjunction Down syndrome
Around 90% to 95% of all the people who have Down syndrome are suffering from Standard Trisomy 21. Individuals who have 3 copies of Chromosome 21 in all the cells are born with this form of Down syndrome. Trisomy 21 occurs when there is an abnormal division of cells during the development of the egg cell or even the sperm cell. Around 88% of all Down syndrome instances come from the nondisjunction in the maternal gamete; while the paternal side constitutes of 8% of the total cases.

Standard Trisomy 21 occurs when there is a nondisjunction in the gametes before conception, which affects all the cells present in the child’s body. However, at times only certain cells are affected by the abnormal division, while others are just fine. This is known as Mosaic Down syndrome, or Mosaicism. There are two ways in which this form of Down syndrome can occur. The first is a nondisjunction process that occurs during the earlier stages when the cell divides in the embryo that is normal, which results in few of cells being affected by Trisomy 21. The other way occurs when an embryo with Down syndrome goes through nondisjunction, but certain cells within the embryo return to the standard chromosome arrangement. This form of the disorder is quite rare and constitutes for about 1% or 2% of observed Down syndrome instances.

Sometimes, Down syndrome is caused when part of Chromosome 21 becomes attached or trans-located to a different chromosome, before or during conception. People who have Translocation Down syndrome have the normal two copies of chromosome 21. However, they also have extra material from chromosome 21 attached onto the trans-located chromosome. Translocation Down syndrome is the only type that can be passed on from a parent to the child. This form of the disorder is also quite uncommon and constitutes for about 2% or 3% of observed Down syndrome instances.


Saturday, October 13, 2012

students support homecoming queen nominee with Down syndrome

by Marc Valero from Tampa Bay Online:
Sebring High School students clapped and cheered for 26 senior guys and gals during the Homecoming Court Processional on Wednesday morning in the school's gymnasium.
The event gave students a chance to see the guys in dress suits and the gals in evening gowns before they voted later in the day for the 2012 homecoming king and queen.
One of the nominees the students selected for homecoming queen, and a favorite in many hearts, is Samantha Alamo, who has Down syndrome.
As he waited to walk in the processional, J.T. Gaskins said, "I am so nervous right now."
Commenting on Samantha, J.T. said, "I think it's great; I actually want her to win and I believe that she will, actually; she's a good candidate."
Samantha's caretaker is her sister, Krystle, who said relatives from Bartow and Kissimmee are coming to town to join her family in Sebring to see Samantha and celebrate her selection.
"Everybody is super excited," she said. "We're super excited. Everybody has been really, really good about having her in homecoming."
The year has gone by fast, she noted. Their mother passed away in April and their father died in April 2011.
"She (Samantha) got the great honor to come live with me," Krystle exclaimed.
Samantha said the best part of school is her friends.
She likes to bake cakes, cupcakes and brownies, Samantha said.
Sister-in-law Nicole Torres said Samantha also makes deviled eggs.
"I taught her one time and went to the house the next week and you were making them all by yourself," Torres said looking at Samantha.
The 26 nominated guys and gals relaxed a bit after being presented to the first of two assemblies of students in the gymnasium.
Samantha's homecoming processional partner, Dalton Helvey, said, "It's fun and exciting. It's a new and memorable experience. It's something different that you don't get to do every day."
This is Dalton's second year working with Samantha in class.
"She's a good friend of mine," he said. "We are glad she can make (homecoming) court this year.
Homecoming queen nominee Cheyenne Reeves said Samantha looked pretty and did well during the processional.
Commenting on Samantha, Principal Anne Lindsay said, "She's one of the whole school. It doesn't surprise me. They are all special students and they all have their own gifts and talents and so does she.
"We don't see her as different, we see her as one of us."
The boys and girls were paired up for the processional, but all the Sebring High students will vote for their favorite for king and queen, irrespective of the processional pairings.
The king and queen winners and three male and female runners-up will make up the Homecoming Court.
The winners will be announced Friday night at the homecoming football game at Firemen's Field.