Sunday, March 31, 2013

Egg-ormous! Easter Chocolate Treat Goes for Record

by Bryan Llenas from Fox News Latino:
Talk about a sugar high. 
A 19.685-foot-tall Easter egg made of 9,920 pounds of hand-made chocolate could become the world's largest when completed in Miramar, Argentina.
In other words, the chocolate behemoth will weigh as much as a large hippopotamus, three Volkswagen Beetles, or 450,000 eggs in a huge bowl.
"We are hoping to enter the Guinness Book for the biggest egg in the world made of chocolate," Carlos Pagilardini, director of the Miramar region tourism office, told AFP. "There is already a bigger one but it is made of metal and wood. This one is totally chocolate."

Pagilardini said this is the first time anyone has ever attempted to make an Easter egg entirely out of chocolate and from scratch. No machinery has been used in the process – the chocolate is made entirely by hand.
Currently, the Guinness World Record title for the "world's largest chocolate Easter egg" goes to Le Acciaierie shopping center in Cortenuova, Italy. That chocolate egg weighed 15,873 pounds and was over 34 feet tall, and was 64 feet at its widest point. But it was supported by a wood frame.
The chocolate egg is currently being cooked and assembled underneath a tent by a team of 30, mostly kids with Down syndrome, in the middle of the summer tourist resort town 280 miles south of Buenos Aires. The head chocolate chef has worked with special needs kids at the Centro de Dia Crede, an institute for kids with special needs that is dedicated to helping kids learn to read and play sports. 

Saturday, March 30, 2013

Middle school cheer squad welcomes new member with Down Syndrome

from WCSH 6 Portland by Michele Mullen:
A 13-year-old girl is learning it isn't easy being a cheerleader.
"I think it's pretty cool that I'm a cheerleader," said Sarah Hill.
Hill's 30 new teammates think it's pretty cool that she's with them.
"It definitely has pulled us closer, cause like, everybody is helping Sarah, so it's like a team basically now," said teammate Rashel Vega. "Usually it was like, eighth-graders on one side, seventh-graders on the other, sixth-graders on the other, and like everybody had just joined together into a really big team."
The seed was planted in Hill's mind in early March while watching a cheer performance. The eighth-grader, who has Down Syndrome, turned to her aid and said she wanted to join the team.
"She said, 'Jessica, I'm going to be a cheerleader someday,' and I looked at her and I got a little teary-eyed and I said, 'Yeah, you are.'" said aid Jessica Ortiz.
Calls were made and a plan was put into place, a day later, Hill was invited to join the New Brighton Middle School team.
"It just make me proud, proud of what we can do as people for each other, and Sarah's done a lot more for me than I've done for her," said cheerleading coach Jen Walker.

Friday, March 29, 2013

'Cough syrup' could help people with Down syndrome

by Sarah Dingle from ABC Australia:
An ingredient in cough mixture could hold the key to improving language skills for people with Down syndrome.
Researchers from Monash University believe BTD-001 - an ingredient in cough syrup which was first discovered in the 1920s - could improve the memory, language and learning of people with the condition.
Associate Professor Bob Davis, who is the head of the centre for Developmental Disability Health at Monash University, says throughout the last century BTD-001 has been prescribed for everything from persistent coughs to Alzheimer's disease.
"In the 1950s and 60s it was used ... as an ingredient for a drug for people with dementia," he said.
"People with dementia seemed to improve their memory and ... cognitive ability, so the ability to think.
"At that stage the medication had been shown to be safe and while there were some small studies indicating that it seemed to work, it didn't have the large drug trials that are required nowadays."
Since then, Prof Davis says it has been established that BTD-001 improves the conductivity of the nerves in the brain.
He says a US research foundation discovered that in comparison to the general population, the nerves in people with Down syndrome have less conductivity and a diminished ability to store information.
His study, which is based in Australia and New Zealand, is aimed at identifying how memory and cognitive ability is affected by the medication.
Catherine McAlpine, head of Down Syndrome Australia, welcomes the research but has some reservations.
"There are very few research projects into helping people with Down syndrome and the primary area of research is in prenatal testing which has its own ethical boundaries and ethical issues," she said.
"Clearly, if we can do things that help people with Down syndrome be more independent, then that's a good thing for everyone.
"But it can be a little bit complicated when we are talking about quality of life and increased cognition being one and the same because they're not the same thing."
There are about 6 million people with Down syndrome worldwide.

Thursday, March 28, 2013

NDSS, NDSC and other advocates meet with US DOJ re: Robert Ethan Saylor

NDSS logo

Contact: Julie Cevallos                           
National Down Syndrome Society                       

National Down Syndrome Society Meets with the U.S. Department of Justice and other Representatives of the Down Syndrome Community

Meeting focused on the need for national law enforcement and first responder training guidelines, to be implemented nationwide, regarding individuals who have Down syndrome.

Washington, DC – March 27, 2013. The National Down Syndrome Society (NDSS) attended a meeting yesterday with the U.S. Department of Justice (DOJ), along with National Down Syndrome Congress (NDSC), the Kennedy Krieger Down Syndrome Clinic Director Dr. George Capone, representatives from our Frederick County, Maryland affiliate, Family Resource Information and Education Network for Down Syndrome (F.R.I.E.N.D.S.), and representatives of the Saylor Family. With the Robert Ethan Saylor case high on their watch list, the Community Relations Service (CRS) of the U.S. Department of Justice initially reached out to F.R.I.E.N.D.S. to offer their services, which resulted in yesterday’s meeting. Robert Ethan Saylor died in Frederick County, Maryland on January 12, 2013.

NDSS is determined to see to it that necessary actions are implemented to ensure tragedies like this never happen again. “Our hearts and sympathies go out to the family and friends of Robert Ethan Saylor.  At NDSS, we envision a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. Ethan deserved to be a welcomed member of his community. We join the rest of the Down syndrome community in their sadness and outrage as we act for positive change,” says NDSS Vice President of Advocacy & Affiliate Relations Sara Weir. 

Yesterday, the discussion centered around the need for national law enforcement and first responder training guidelines regarding individuals with Down syndrome to prevent another tragedy of this nature happening again in the future, in any town in the United States.

Wednesday, March 27, 2013

Child with Down Syndrome Booted Out Of Cineworld 'For Laughing Too Loud'

from the Huffington Post:
A mother has complained to Cineworld after her daughter, who has Down Syndrome, was kicked out of a children's film for laughing too loudly.
Ema Louise Brown took her seven-year-old daughter Sienna and nine-year-old son Shaun to watch The Croods, an animated comedy, on Broad Street in Birmingham.
However despite the whole theatre laughing uproariously, she said she was surprised to be approached by an usher.
She posted on the Facebook page for Down Syndrome Awareness later to explain what happened, writing: "Sienna was laughing her head off, as were the other children, but we were asked to leave by a very rude member of staff because she was apparently laughing too loud!
"I said to him she has down's and is quite loud at times, but was only laughing, and he said to me 'well I need you to leave.'"
After Ms Brown asked to speak to his manager, another member of staff came over and repeated their request for the family to go.
Though Ms Brown told them they were guilty of discrimination, the manager ignored her pleas and walked off, while the first member of staff reportedly replied: "You shouldn't take your child to the cinema."
She said she then lost her temper, and shouted at the man: "Because my child has downs and is loud with her laugh, because she doesnt understand she needs to laugh quietly, I shouldn't take her out?"

Tuesday, March 26, 2013

Molecular Roots of Down Syndrome Unraveled

Neurons from a typical mouse (left) are longer and fuller than neurons from a mouse lacking SNX27 (right). (Credit: Image courtesy of Sanford-Burnham Medical Research Institute)

from Science Daily:
Researchers have discovered that the extra chromosome inherited in Down syndrome impairs learning and memory because it leads to low levels of SNX27 protein in the brain.
What is it about the extra chromosome inherited in Down syndrome -- chromosome 21 -- that alters brain and body development? Researchers at Sanford-Burnham Medical Research Institute (Sanford-Burnham) have new evidence that points to a protein called sorting nexin 27, or SNX27. SNX27 production is inhibited by a molecule encoded on chromosome 21. The study, published March 24 in Nature Medicine, shows that SNX27 is reduced in human Down syndrome brains. The extra copy of chromosome 21 means a person with Down syndrome produces less SNX27 protein, which in turn disrupts brain function. What's more, the researchers showed that restoring SNX27 in Down syndrome mice improves cognitive function and behavior.
"In the brain, SNX27 keeps certain receptors on the cell surface -- receptors that are necessary for neurons to fire properly," said Huaxi Xu, Ph.D., professor in Sanford-Burnham's Del E. Webb Neuroscience, Aging and Stem Cell Research Center and senior author of the study. "So, in Down syndrome, we believe lack of SNX27 is at least partly to blame for developmental and cognitive defects."

SNX27's role in brain function
Xu and colleagues started out working with mice that lack one copy of the snx27 gene. They noticed that the mice were mostly normal, but showed some significant defects in learning and memory. So the team dug deeper to determine why SNX27 would have that effect. They found that SNX27 helps keep glutamate receptors on the cell surface in neurons. Neurons need glutamate receptors in order to function correctly. With less SNX27, these mice had fewer active glutamate receptors and thus impaired learning and memory.

Monday, March 25, 2013

Teen Treks to Mount Everest Base Camp to Raise Awareness for Down Syndrome

by Samantha Tata from 4 NBC Los Angeles:
A 15-year-old boy with a passion for sports and an infectious smile became the first person with Down syndrome to stand at the base camp of Mount Everest, and returned to Southern California Friday night to a jubilant welcome.

Elisha "Eli" Reimer landed at Los Angeles International Airport Friday night after making the 70-mile trek, which was more than a goal – it’s what Eli’s father calls the family’s mission.
Bundled up against the frigid temperatures, Eli, his father and six others made the journey to benefit the Elisha Foundation, based in Oregon.

Sunday, March 24, 2013

Make World Down Syndrome Day a Day of Action

Thursday (3/21) is World Down Syndrome Day.  It is a day of celebration and of recognition.  It is also a day of global awareness.

Honestly, I've about had it with awareness.  I'm done, finished.  Most people are aware of Down syndrome by now.  They may not know exactly what is involved and may be very prejudicial as they base their opinions on outdated and incorrect information.  But, they know it exists.  Instead of having yet another day of awareness, I'd like to make World Down Syndrome Day one of remembrance and action.

Several things have weighed on me in the last little while.  The first is a doll, made by a mother of a 13 year old girl with Down syndrome.  They are called "Dolls for Downs" [spelled incorrectly].  The idea here is that "every child wants a doll that looks like themselves." 

I don't agree and furthermore, I am uncomfortable with these dolls in principle.

Firstly, I dislike anything that has the potential to perpetuate the stereotype that all people with Down syndrome look the same.  They don't.  My son looks like the rest of my kids;  an amalgam of mine and my husband's family.  He does not look like these dolls any more than any other child with DS that I know personally.  I find the description of "pudgy features" in the video to be extremely offensive.

Additionally, like the bald barbie debate for pediatric cancer patients, I'm going to take the stance that my son does not need this doll.  He does not need another feel good, "isn't that cute!", soft focus awareness campaign (which is what this doll will surely turn into).  He needs a medical profession who gives a damn.  He needs a society that is tolerant and accepting of neurodiversity. He needs an education system that will not decide his future based on bureaucracy and preconceived notions.  He does not need a doll whose proceeds line a private pocket, like most "awareness" paraphernalia does.

Saturday, March 23, 2013

One Mom’s Wish For Her Son With Down Syndrome

by Colette Cosky from
To help honor World Down Syndrome Day, we asked Colette Cosky, a mother of two and a marketing executive in San Diego, to share her thoughts. After her son was born with Down syndrome, she founded the organization Down Right Awesome and helps raise awareness and support for Down syndrome research.
For me, World Down Syndrome Day is an opportunity to broaden everyone’s perception of Down syndrome by seeing it through the eyes of the families who live it. I’m one of those families; my 2-year-old son, Dexter, has Down syndrome. (There we are, in the collage.) While we all have some things in common, no experience is the same and not everyone shares the same passions or beliefs. My passion is my commitment to cognitive preservation because Dexter, like all children with Down syndrome, is predisposed to early-onset Alzheimer’s disease. Here’s what I want other families to understand.
As I live my life, the pages of my mental scrapbook are filled with really big moments, with scents that take me to specific places in time, and with faces of those who’ve left my life in one way or another. It’s here I can visit my 4-year-old Eloise back when she was 2, or my Nana, who passed just a year ago. I can go to those memories at any time to rewind, re-live, and re-love.
In the early days of my experience with Down syndrome, I was consumed with all the things I thought Dexter couldn’t or wouldn’t do. Now that’s not the case. I think the only time I get anxious or sad is when society pulls out its standardized ruler and judges my son. Like now, as we search for a preschool, the experience is not the same as when we looked for our daughter. Without even meeting my son, people give us gentle letdowns explaining how the school can’t handle Down syndrome. But if they’d only put the person first, we know they’d see a kid who loves to be with others, who is fascinated by books, and who is eager to learn new things.

Friday, March 22, 2013

the University of Tennessee recognizes and encourages the potential of people with Down syndrome

by Emily Stroud from WBIR NBC 10:
In the United States, more than 400,000 people live with Down syndrome.
For the first time The United Nations is recognizing "World Down Syndrome Day" March 21st.
Every day, the University of Tennessee recognizes and encourages the potential of people with Down syndrome.

One young man is making the most of an innovative program at UT.
Chad Mitchell really enjoys his internship as a manager with the Lady Vols.
He likes hanging out with his girlfriend.
"When I first met her last year I knew she was the one so," Chad Mitchell said. "I dropped down on one knee and I asked her to be my girlfriend. And what did she say? She said yes."
He loves taking classes at the University of Tennessee. He's part of the FUTURE program for students with intellectual disabilities.
"The FUTURE program is a two year certificate program in which the primary goals are career and independence, just like every other college student here at the University of Tennessee," David Cihak said.
University of Tennessee Associate Professor David Cihak explained that Chad and his fellow students audit courses, have work-based internships, and take classes in practical career skills and life skills.
"And they also participate in all the other activities here on campus whether it be going to the games, participating in the museums, going to the theaters, working with the volunteers who work with our FUTURE students," Cihak said.
Chad said, "I hang out with my friends."
An especially good friend is his little sister Caroline.
"Joy. True genuine joy. That's what he brings me in my life and so many other people," Caroline Mitchell said.
In age, they are five years apart. In distance, they go to college three hours apart. But Chad and Caroline continue to be close

Thursday, March 21, 2013

DSRTF: 1PM EST Webinar and 3:1 donation matching on 3/21

Your Donation Matched 3:1 on 3/21

We're thrilled to announce that In celebration of World Down Syndrome Day, your donations on March 21 will be matched three to one — your $100 becomes $400, your $500 becomes $2000, and so on. This is an incredible one-day opportunity to maximize your impact on the progress of research. Plan your gift now, then donate on WDSD to take advantage of this chance to help speed science to a future of improved cognition and greater fulfillment for our loved ones with DS!

World Down Syndrome Day Webinar

Scientists used to think the intellectual disability conferred by Down syndrome was too complex to treat. But thanks to the enormous strides researchers have made, we now believe that it's not only possible to improve cognition through drug treatment, but that the goal of improved learning, memory, and speech for people with DS may be within reach.
Join us for this special World Down Syndrome Day event, when we introduce the basics of cognition research, discuss current research initiatives, and report on clinical trials now underway. Presenters from DSRTF and Roche, the global health care company, will offer an informative, accessible presentation appropriate for those new to the topic, and will answer audience questions as time allows.  Register now for this event, and join us on Thursday, March 21 at 10 AM PT / 1 PM ET as we share the promise science holds for our loved ones with DS.

World Down Syndrome Day 2013 - JOIN US!

World Down Syndrome Day 2013 is nearly upon us and we hope that you are all looking forward to observing 21 March in all the great ways you have chosen to. Everyone at Down Syndrome International is ready for another truly global celebration!
Here are 6 ways you can help us to raise the profile of people with Down syndrome worldwide and promote their right to be included in our communities:

1.       Watch and Share the 2013 WDSD Global Video Event
2.        Read and Share the worthy awardees of the 2013 WDSD Awards
3.       Watch and Share the live UN Webcast of the 2013 WDSD UN Conference on 21 March from 10am-6pm U.S. Eastern Daylight Time (GMT -4)
4.       Read about and Share with us details of your WDSD events on the WDSD Website Events pages
5.       Join our campaign to wear “Lots of Socks” on 21 March to raise awareness worldwide
6.       Join WDSD on Facebook and Twitter to keep up with activities on 21 March.

Thank you so much for your support and we hope you enjoy your day.

Andrew Boys

Andrew Boys
Down Syndrome International
T: 0044 (0)20 8614 5124 F: 0044 (0)0845 230 0373
M: 0044 (0)07810 153294

Join us and celebrate World Down Syndrome Day on 21 March each year.

DSR Episode #19: Happy World Down Syndrome Day!

We got the band back together for a quick roundup of events happening in celebration of World Down Syndrome Day on 3/21.  Much like the podcast, this write up is going to be short and sweet.

To celebrate, you can:
  • Attend (either in person or virtually) the World Down Syndrome Day Conference at the UN in New York.  Our tireless superhuman cohort, Rick, and his amazing daughter, Kayla, will be there.
  • This year’s conference theme is “Right To Work”.  Check out this awesome video and share it in all of your social spaces.
  • Wear lots of socks to get people talking and raise awareness for Down syndrome.
  • Learn about the research programs and clinical trials in the DS Cognition Research 101: An Introduction webinar put on by DSRTF.
  • Support cognition research by donating to DSRTF and have your donation matched three to one.  Only on March 21, your $100 donation becomes $400 in celebration of World Down Syndrome Day!!
  • Do something in your local community.  There are tons of events happening all across the globe!
  • Lobby Google to use the World Down Syndrome Day Google Doodle on March 21st.
  • Get the word out to all of your friends through your social media connections.
  • Keep an eye on for a guest post by someone you may recognize.  :)
Most of all, make your voice heard.  The best way to raise awareness is to celebrate the people in your life who have Down syndrome.  Show the world what it means and how people with Down syndrome play a vital role in our communities.
Happy World Down Syndrome Day!
Download Down Syndrome Radio, Episode #19.
Better yet…subscribe, rate us and leave a comment on iTunes!

Wednesday, March 20, 2013

Buddy House dream to become reality for Down syndrome organization

Down Syndrome of South Central Kentucky will see a vision become reality with the opening of its Buddy House for Down Syndrome.
”Five years ago, it was just a dream. It’s like it developed so quickly and came together. We can’t believe we’re starting out with such an incredible facility. The community donated money, time and resources,” said house director Jane Tichenor. “On our own, we couldn’t have done it. We had people who don’t have Down syndrome and just wanted to help. I am humbled and speechless at the generosity of people.”
An open house will be from 10 a.m. to 6 p.m. Thursday at 522 State St., with an official ribbon-cutting at 4 p.m. The BG Rockerz will perform during the ribbon-cutting. Official Buddy House T-shirts, including special shirts for infants and toddlers, will be sold for $10.
The date of the open house has significance – Thursday is World Down Syndrome Day, observed every March 21 to symbolize a third copy of the 21st chromosome in people with the genetic condition.
The house will have education and activities for infants, children and adults with Down syndrome and their families, as well as parents who have learned their child will have the genetic condition before birth.
”We want to reach out to people who just received a diagnosis, or gave birth to a child with Down syndrome. We have a welcome area where they can feel comfortable,” Tichenor said. “It’s a place where we can actually help our children, infants and adults, to support them in education and supplement what they learn in school to help them be more successful in life.”
The 3,000-square-foot building will house a Western Kentucky University-themed Big Red Room that will feature computers to help continue adult literacy and math and a Big Bright Room for school-aged children to help them develop speech, adaptive play and gross motor skills. There will be a lending library, meeting room, a kitchen to teach independent living skill and space for the BG Rockerz and ADAM group for younger children to dance.
”They learn so much. It even helps their speech,” Tichenor said. “They’re following directions and learning to have body control and balance.”
Because of its downtown location, Tichenor is “excited for opportunities of being out in the community.”
”We want everyone to know this will be a place to come gather and grow together and want to see all our loved ones with Down syndrome be all they can be and reach their full potential,” she said. “The more I meet these wonderful people, the more I love them.”

Tuesday, March 19, 2013

Parents of children with disabilities pressure congress for help

Parents of children with autism, down syndrome and other disabilities are in Washington fighting for help. They want congress to pass the ABLE Act. It would let these families set up tax-free accounts. (Cox Washington Bureau)

Monday, March 18, 2013

North Dakota Senate passes legislation protecting preborn with heartbeat, Down Syndrome

from Live Action News by Lauren Enriquez:
Why would a heartbeat not be considered life? It makes so much sense. These are the simple words of Rep. Bette Grande (R-Fargo), a North Dakota legislator who aligns common sense with legislation. This combination of logic and law tends to be avoided by the pro-abortion counterpart, as a quote from Elissa Berger of the ACLU attests: [W]e should be able to agree that this personal decision is best made by a woman and her family, not politicians.
This overused soundbite from the abortion lobby affirms the disconnect between common sense and legislation: does abortion affect one life or two? Two. So shouldn’t the abortion decision take into consideration both of the lives affected by it?
As a result of the hard work of commonsense legislators like Rep. Grande, North Dakota has installed legislation that protects pre-born children whose fetal heartbeat can be detected. This means that the right to life of pre-born children as young as – wait for it – five or six weeks’ gestation are now protected by North Dakota state law.
There is still work to be done, of course: pro-lifers won’t rest until all life is protected by law. But this breakthrough in North Dakota is certainly laudable progress, and it may serve as a catalyst for the more stringent laws needed to protect life beginning at fertilization.
As if this were not cause enough for celebration, North Dakota’s heartbeat legislation passed in the Senate on Friday alongside another phenomenal bill that will add unprecedented protections to genetically unique pre-born children, such as those with Down syndrome. The bill, also sponsored by Rep. Grande, is similar to bans on sex-selection abortion. It prevents pre-born children from receiving a death sentence based solely on an undesirable abnormality.
Rep. Grande does not mince words when addressing the rekindled phenomenon of eliminating genetically “abnormal” children arbitrarily. In a poignant but accurate comparison, she observed:
It takes you back to Hitler, and we know where that went. He started going after those with abnormalities, and I think it’s an absurdity we would go back to that kind of thing.
These two piece of legislation will make their last stop at Governor Dalrymple’s desk. The leader has indicated that he will sign the bills into law. We hope and pray for that day, and we applaud North Dakota for its daring efforts in the face of opposition.

Sunday, March 17, 2013

St. Patrick's Day Festival includes DSA Singapore!

from the Straits Times:

The Singapore River will be transformed into a sea of green once again as the annual St Patrick's Day celebrations return - and bigger than ever before. This year, St Patrick's Day Street Festival will go on for three days instead of just one, and it will not just be the merrymakers in green - the OCBC Centre will be lit up with shamrocks for the entire weekend.

Organised by Singapore River One, the festivities begin on March 15 and will culminate in the St Patrick's Day Parade at 3pm on March 17. The celebrations join some of the world’s most famous landmarks and sites that will go ‘green’ on St Patrick’s Day (March 17) under Ireland’s annual “global greening” initiative, including the Christ the Redeemer statue in Brazil and the Pyramids of Giza and the Sphinx in Egypt.
Throughout the weekend, the public will also be treated to performances by Irish bands, the Irish Inspirational Dancers troupe, an International Street Fair, street artists that including face-painters and balloonists, and Irish Walking Tours that trace the shared history between Ireland and Singapore.

There will be Irish food and drink promotions, as well as a lucky draw, running at participating Boat Quay restaurants and bars on all three days.

The parade will start at Old Parliament House and proceed along the Singapore River, before ending on Circular Road, where a massive post-party will take place. Prizes await the best dressed among Parade participants.

Ambassador of Ireland to Singapore, Mr Joe Hayes, is the festival’s honorary patron. Senior Minister of State for Education and Law Ms Indranee Rajah, and Irish Government Minister Brendan Howlin will be the guests of honour at the March 17 St Patrick’s Day Parade, jointly celebrated with World Down Syndrome Day.

This is the second year running that the St Patrick’s Day Festival and the Parade form the backdrop for World Down Syndrome Day (WDSD) celebrations organised by the Down Syndrome Association (Singapore). Its members, along with their families and friends, will march in the March 17 parade. Its dancers and drummers will perform throughout the festival.

Saturday, March 16, 2013

New prenatal testing to detect Down Syndrome to begin in Japan in April

by Cherrie Lou Billones from Japan Daily Press:
The Japan Society of Obstetrics and Gynaecology, during a board meeting, came up with guidelines for the conduct of a prenatal test which is meant to see if the fetus possesses any of the three types of chromosomal abnormalities, including Down Syndrome. The guidelines were compiled recently on Saturday, March 9, and the blood test could be available in Japan as early as April this year.
Some 20 medical institutions were already given approval by their ethical committees to perform the test; these include the National Center for Child Health and Development, Hokkaido University Hospital, Osaka University Hospital and Showa University Hospital. Before the month ends, a committee body of the Japanese Association of Medical Sciences is likely to finish with the screening of all other medical institutions that will be allowed to perform this exceptional blood test.
The guidelines are aimed to ensure that the blood test will not be used in an extremely casual manner, lest it be the cause of unethical decisions that could lead to the objectification of human life based on disabilities. Under the guidelines, the test is to be limited only to certain facilities that have sufficient provisions for counseling. It is also a requirement that full-time and certified obstetricians, gynecologists and pediatricians are employed in these medical institutions. And, only women who are pregnant at an advanced age or who have a record of fetal chromosomal abnormalities in past pregnancies may take the test.

Friday, March 15, 2013

GDSF's Be Beautiful Be Yourself Gala in Washington DC!

BBBY 2013 Gala

May 8, 2013 – Save the Date for the Global Down Syndrome Foundation’s
Be Beautiful Be Yourself Gala in Washington, DC!

Join us May 8 to celebrate our models with Down syndrome, 2013 Ambassador Cole McMorris Rodgers, and Quincy Jones Exceptional Advocacy Award recipient U.S. Rep. Cathy McMorris Rodgers. More details about the event and registration information are coming soon! For more information, contact Jessica Karlsruher at 703-683-7500 or
Auditions for the models will be Friday, March 15, at the George Washington University in Washington, DC. Registration for the auditions is open now!

Thursday, March 14, 2013

The Congressional Down Syndrome Caucus

Launching the CDSC

The mission of the Congressional Down Syndrome Caucus is to educate members of Congress and their staff about Down syndrome. The Caucus will support legislative activities that would improve Down syndrome research, education and treatment and promote public policies that would enhance the quality of life for those with Down syndrome.

 Caucus Co-Chairs

  • Urge relevant authorizing committees to support Down syndrome programs and patient care through letters and testimony.
  • Hold informational events for Members and staff here in DC to increase awareness of the disorder among Members.
  • Ensure Down syndrome is adequately addressed in all relevant legislation and regulations.
  • Continue to build House Congressional Down syndrome Caucus into a sustainable, dynamic political force and informational clearinghouse by increasing membership and activities.
  • Work with National and Local Down syndrome groups to develop leading edge educational, medical and work related initiatives that support individuals with Down syndrome.
  • Identify and strike down barriers in the law for person’s with mental disabilities.
  • Expand opportunities for the Down syndrome population in education, the workplace and society at large.
The goals of the Congressional Down Syndrome Caucus are:
  • To raise expectations and improve outcomes in education.
  • To eliminate barriers to economic opportunity in employment and in programs that promotes savings and investment.
  • To promote and fund research that accelerates the development of effective treatments and therapies.
  • Promote the translation of Down syndrome research into effective new treatments through interdisciplinary cooperation among the various NIH institutes, the FDA, the CDC and privately funded scientists and clinicians.
  • To promote inclusiveness for people with Down syndrome.
  • To help provide family support services and a community of care model.
  • Advocate for the rights of those with Down syndrome and make sure those rights are being enforced.
Like The Congressional Down Syndrome Caucus Facebook Page.

John Anton Goes to Washington

Wednesday, March 13, 2013

Achieving a Better of Life Experience (ABLE) Act: 2013 Overview

from the NDSS:

The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by a bipartisan, bicameral set of Congressional Champions including Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX). 

The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.

An ABLE account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. The legislation also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the beneficiary passes away. It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program.

You can do your part to advocate for the ABLE Act and other key Down syndrome legislative priorities at the 2013 Buddy Walk® on Washington!

ABLE Act Status

The ABLE Act was introduced in the US Senate and US House of Representatives on Feb. 13, 2013. You can find out if your two senators and representative are cosponsoring the ABLE Act of 2013 by clicking the links below:
Senate ABLE Act Cosponsors
House ABLE Act Cosponsors
You can find out if your two senators and representative cosponsored the ABLE Act of 2011 by clicking the links below:
Senate ABLE Act Cosponsors
House ABLE Act Cosponsors

Take Action

NDSS offers you different ways of contacting your Representative and Senators.

NDSS Resources

External Resources

Tuesday, March 12, 2013

Eat at Ruby Tuesday on 3/21 to benefit Reece's Rainbow and other local DSAs!


Come join Reece’s Rainbow at RUBY TUESDAY for lunch or dinner

on March 21, 2013

In MD/DC/VA, Reece’s Rainbow will earn 20% of your meal total!
In the other metro areas, the *local Down syndrome family support groups* will earn 20% of your meal total!

 We’re so grateful to our friends at Ruby Tuesday for another opportunity to raise awareness for people with Down syndrome in our communities!

In only 6 1/2 years, Reece’s Rainbow has helped find “forever families” for almost 1000 orphaned children with Down syndrome and other special needs around the world!  These children are now living happy, healthy, cherished lives with families in communities all across America!  Join us for lunch or dinner (or both!) on Thursday, March 21, 2013, and show your support for Reece’s Rainbow!  EVERYONE IS WELCOME, not just families of children with Down syndrome.   This is an important opportunity to reach outside of our existing Down syndrome/special needs community, and share the GIFT of Down syndrome as we all know it

A TWIST!  Post on our
Facebook page or Tweet photos (@reecesrainbow #downsyndromerubytuesday) of you and your family/friends eating at your local Ruby Tuesday during our “Giveback”, and one random winner will win $1000 to donate to your choice of families adopting a child with Down syndrome with Reece’s Rainbow!
  1. See the list below for the participating restaurants in your state.
  2. Facebook, tweet, blog, email and invite your friends & family to join you
  3. Tweet this event often over the next 2 weeks to celebs and other folks on Twitter!
  4. Share this event with your local Down syndrome support groups!
  5. Make copies of the flyer and distribute to your local schools, churches, and on cars in parking lots
  7. Take lots of pics and post them on our Facebook Page with your names and city/state
  8. Tweet us @reecesrainbow with hashtag #downsyndromerubytuesday
  9. On Friday, March 22, we will announce the winner!

See below for a complete list of participating restaurants in your state.  Ruby Tuesday does not have stores in every state, and some locations already have other GiveBack events scheduled for this date.  You MUST print out this flier to give to your server for Reece’s Rainbow and your local DS support groups to receive 20% of your purchase!    Click to download or preview then print (if you have the option ‘fit to page’ be sure to select that).
  1. Atlanta (Down Syndrome Association of Atlanta)
  2. Nashville  (Down Syndrome Association of Middle Tennessee)
  3. Memphis (Down Syndrome Association of Memphis & the Mid-South)
  4. Knoxville (Down Syndrome Awareness Group of East TN)
  5. Raleigh (Triangle Down Syndrome Network) flyer coming soon!
  6. Kansas City (Down Syndrome Guild of Greater Kansas City)
  7. San Antonio (Down Syndrome Association of South Texas) (March 22 & 23 only)
  8. Des Moines  (Gigi’s Playhouse)
  9. Baton Rouge (Down Syndrome Awareness Group of Baton Rouge)
  10. New Orleans (Down Syndrome Association of Greater New Orleans)
  11. Indianapolis (Down Syndrome Indiana)
  12. Rhode Island (Down Syndrome Society of Rhode Island)
  13. Maryland/DC/Virginia (Reece’s Rainbow)

Grab This!

Monday, March 11, 2013

Surrogate Mother Flees Halfway Across US to Save Baby From Intended Parents

by Kevin Dolak from ABC News:
The travails of carrying a baby for another couple took an emotional turn for a Connecticut surrogate whose ultrasound showed a fetus with birth defects. Her life was turned upside-down as she coped with pleas and even a monetary offer from the intended parents to abort while discovering that legally she had no rights over the pregnancy in her state, leading to a secret flight halfway across the U.S.
Crystal Kelley was a single mother of two girls when she decided to become a surrogate. In late 2011 Kelley, 30, wanted to help a couple conceive and she could use the surrogacy fee – often upwards of $20,000 -- to supplement her income as she raised her girls. Kelley outlined her experiences on her blog, Surrogate Insanity.
Through a surrogacy agency, Kelley was able to find an established family in New York with three other children who wanted to conceive. According to her blog, the couple, who have not been named, said they had two frozen embryos, which were transferred to Kelley in October 2011. Soon, she was pregnant.
The pregnancy started off fine. Kelley said that she received not only the financial support that she had expected from the intended parents of the baby, but emotional support as well. The intended mother called her frequently to check in and even bought Kelley's daughters Christmas presents.
But everything changed with her surrogacy on the day of her 21-week anatomy scan.
As Kelley explained in her blog, she saw flickers of concern come across the technician's face during the scan. Then she starting getting alarming messages from the intended mom, Kelley wrote.
"This is not good, this is a problem," a frantic series of texts from the intended mother read, according to Kelly. "We have to do something right away."
The scan showed that the fetus, which they had discovered was female, had a cleft palette. The unborn baby also had a cyst on her brain, Kelley wrote. They suspected that the baby had Down syndrome.
As Kelley explains it, after she went for a maternal blood screening test to check the fetus for Down syndrome, the intended mother called her and said she wanted her to abort, saying that the couple "do not intend to bring a child into the world that has a significant disability and will require several surgeries to survive," according to Kelley.
She realized that the midwives, who had contacted the facility, told the intended mother of the baby that there was cause for concern, Kelley wrote.
Kelley wrote that she was shocked. She didn't think the couple were the "'baby's not perfect, let's terminate type." She checked the contract she signed with the couple, which stated that for an abortion/reduction, there must be a "severe fetal abnormality," she wrote.

Sunday, March 10, 2013

New prenatal screening test for Down syndrome raises questions

by Leisa Scott from The Courier Mail:
IT RAINED the day they got the news. Big, pelting drops, as if some screenwriter well-versed in melodrama was dictating the scene.
Annie Love couldn't take the call. She'd been going "slowly nuts" waiting for diagnosis day to arrive and was only just holding herself together. Her husband, Ben, answered the phone. He nodded. Then he mouthed the words. "It's positive. Baby has Downs."
They cried. Huge, heaving sobs to rival the rain. In the days and weeks that followed, they'd pull themselves together, then lose it all over again. And they grieved. This was not the picture they had of their family. This baby was meant to be "normal" just like Sam, then 4, and Charlie, then 2. Now the picture had changed, fuelled by stereotypes: an overweight kid with a bad haircut being teased, a life on the fringes.
But they'd already decided after many heart-wrenching talks in the preceding four weeks between suspicious scan and confirming amniocentesis that they would have the baby. If he had Down syndrome, they'd paint a new picture.
So they prepared. Months of grief gave way to a readiness and a joy. Everyone close to them knew their baby would be born with Down syndrome. Now it was time to get on with it. They wrote a birth plan. No-one in that delivery room was to be negative. This was their baby and they were happy. He arrived at 2.55am on March 20, 2012. Nicholas Fenton Angus Love, 3.8kg, 52cm long.
And here he sits on the floor right now, goo-gah-gurgling as he plays with his toy with gusto. Plump, healthy, with a knockout grin. And "chromosomally enhanced", as his mother likes to say.
As she looks at Nicholas playing at their home in Gordon Park, on Brisbane's northside, it's hard for Annie, a Catholic, to admit she considered abortion. So did Ben. "From a relationship perspective it was probably one of the hardest things we've ever had to go through," says Annie.
That the Loves decided to have Nicholas after the amniocentesis confirmed Down syndrome makes them a rarity. Most don't. Only 5.3 per cent of pregnancies where there is a prenatal diagnosis of Down syndrome are continued. This figure comes from a respected Victorian study, the only (now-defunct) research in Australia that followed the link from prenatal diagnosis to live births of babies with Down syndrome. Released in 2008 and based on figures from 1986 to 2004, the study was co-authored by associate professor Jane Halliday, a public health genetics expert with Melbourne-based Murdoch Childrens Research Institute. "The vast majority, 95 per cent, were terminated," she says.
It's similar across the Western world. About 90 per cent of foetuses with a diagnosis of Down syndrome are terminated in New Zealand, about 92 per cent in the US, about 93 per cent in the UK.
Now, a new element in the vexed issue of Down syndrome and reproductive choice is entering the fray. From this year, non-invasive prenatal testing is available in Australia. The existing invasive methods of diagnosis amniocentesis and chorionic villus sampling (CVS) are taken up by about 6 per cent of pregnant women, generally after an abnormal scan. They carry the risk of miscarriage the main reason women do not seek the test. But the new tests, although expensive and, for now, limited to the wealthy at a cost of up to $2000, do not pose such risks.
Which raises the very real question: Is this the beginning of the end for Down syndrome?

THE refrains of "I'm A Little Teapot" Coming from Brodie Logan's iPad are starting to get a bit too loud.
Mum Angela suggests the five-year-old turn it down. Brodie shoots her a look as if to say 'Party pooper!' and keeps the volume where it is. On the second request, Brodie considers her options and turns it down. Yep, just like most five-year-olds.
Angela smiles at her daughter's chutzpah and continues reeling off Brodie's achievements. "She's writing her own name. She can count well into her teens. She loves to learn, she loves to be with other kids and be involved and play. She packs her lunch (for a mainstream school), wants to help cook dinner. She's independent, fiercely so."
That's not the picture that was painted for Angela and husband Ben, of Ipswich, when Brodie - their first, followed by Harvey, 3, and Sammie, 18 months - was born with Down syndrome. Angela says while the medical care at a major Brisbane hospital was top-class (Brodie needed a heart operation at 11 weeks), she was shocked by the "overwhelmingly negative" advice from medical staff and social workers about life with Down syndrome.