Sunday, September 30, 2012

A most interesting person

Inspiring young woman.............

Most Interesting People: Down Syndrome not a disability for Bergeron


Carrie Bergeron of Rome performs a song in sign language, Monday Sept. 24, 2012. Bergeron is an advocate for people with Down Syndrome and other disabilities. Her first language is sign language and she often sings songs in sign language for various programs. She has been chosen as one of the Mohawk Valley's Most Interesting People.

After you meet Carrie Bergeron, you may feel more affection for tomatoes than you thought possible.
More about that later. But first about the easy-going, blonde-haired, blue-eyed 36-year-old Bergeron.
The Dolgeville native has a black-belt in karate, works with children with disabilities and teaches the elderly tai-chi. She loves to interpret motivational songs through sign language, which she does with special grace.
She’s traveled the country to change people’s minds about what a disability is, because everything she’s accomplished she’s done not in spite of, but with Trisomy 21, also known as Down syndrome.
“All of us with disabilities can do anything they want in their own way,” Bergeron said, sitting in her apartment just off Black River Boulevard.
Bergeron and others with the condition are born with an extra chromosome in their DNA, which can manifest itself in numerous ways.
When she was born, Bergeron had a hole in her heart, a rip in a heart valve, and in her words, “a big tongue and a wobbly head.”
She lives independently in the tidy Rome apartment, but gets help from care staff with transportation, and keeping track of her diet and exercise. The metabolism of people with Down syndrome is 70 percent slower than the average adult, so Bergeron eats organic controls her portions and exercises daily to keep her slim form. Individuals with Down syndrome often have problems with their joints, some have trouble speaking and learning. Bergeron had heart surgery when she was 1 year old to repair the muscle, but otherwise didn’t know she was different than anyone else.
By the sixth grade, though, she noticed she had trouble keeping up. Other students noticed she was different, too, and she was teased a lot.
“I just walked away. I didn’t show my weak spot,” she said, her voice tightening. “I just waited until I got home and burst into tears.”
After her parents intervened, she said, the school started teaching about Down syndrome and what it means. That experience, while painful, is part of the reason Bergeron has traveled the country speaking about Down syndrome.
“Not only do I speak, but I get to meet new people,” she said. “It feels good.”
But first she graduated high school, spent a post-graduate year at BOCES and earned a certificate in early childhood education from Herkimer County Community College.

Now she works part time with children at Upstate Cerebral Palsy. Her mother, Peggy, a retired school teacher, is her inspiration.
“I work with toddlers with special needs,” she said. “I interact with the children, I make sure they’re safe and they’re not getting into trouble.”
Now, about that tomato.
Bergeron has written a story, which she printed on greeting cards she sells, about when she was frustrated by her disabilities.
Her father, Tim, told her a story about his garden the year she was born and a particular tomato that got his attention. It had a large juicy bump on one side. At supper, while the tomato looked different, it was just as juicy as the others.
“My dad tells me that even though I have more difficulty learning than my brother and sisters, my loveable and outgoing personality and strong character make me just as special as they are. I guess I am the special ‘tomato’ on our family’s bush!”
Age: 36.
Residence: Rome.
Occupation: Works part time with children at
Upstate Cerebral Palsy.
Interesting fact: She’s a black-belt in karate,
works with children with disabilities, teaches
the elderly tai-chi, loves to interpret motiva¬
tional songs through sign language.

Be gentle.

Thursday, September 27, 2012


Pups are growing so big!

Born July 3, 2012

3 generation AKC pedigree.

Two coated males and one hairless male looking for a perfect forever home.

Be gentle.

Wednesday, September 26, 2012

Buddy Walk

It's Buddy Walk time.

The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.

Featured Image

Buddy Walk® FAQs


Not at all. The goal of the Buddy Walk is to promote understanding and acceptance of people with Down syndrome. Whether you have Down syndrome, know someone who does or just want to show your support, come and join a Buddy Walk!


There are a number of ways to find a Walk near you in the Walkers section. If you do not see a Walk in your area, you can email the Buddy Walk staff at to find out if a local support group has registered a Walk that is not yet posted.


NDSS has all the tools to help you plan a successful event, from a planning timeline to posters and incentive ideas. Buddy Walks range in size from 50 people to more than 5,000 -- so whatever your time and resources, you can plan a successful Walk for your community! You can begin by reading the Buddy Walk Information Packet for a better idea of what's involved in planning a Buddy Walk. When you're ready to make it official, visit the Organizer section to begin the registration process. Once approved, you'll have access to the Buddy Walk Manual and other helpful resources that will help you plan the best Walk possible.


Yes. Buddy Walk events are open to participants of all ages and abilities. Each Walk location has places where you can sit down, relax, and watch the excitement if you choose not to walk. You can also become a member of the cheering section and cheer on the walkers.


All participants are welcome! From strollers to seniors, all supporters of individuals with Down syndrome are invited to participate. Buddy Walk events are great places to network with families and learn more about support services available.


Fundraising requirements for the Buddy Walk vary from event to event. Please check with your local Buddy Walk to determine whether or not there is a fundraising minimum.


Each Buddy Walk is required to give 7% of funds raised to NDSS, which directly supports the NDSS National Policy Center. Allocation of funds will vary from Walk to Walk, but the money raised at every Walk supports both local and national initiatives that benefit people with Down syndrome.


For information about volunteering at a Buddy Walk in your community, visit the Walkers section to find the Walk closest to you. Once you know the Walk at which you're interested in volunteering, click the details button for contact information to reach out to your local Walk organizer and get involved!


NDSS and the National Buddy Walk Committee regularly hold a nationwide contest for a new t-shirt design for the upcoming Buddy Walk season. The selected design will be featured on the t-shirt at the National Buddy Walk in New York City and will be available to all Buddy Walks that year. The winner of the 2011 Buddy Walk T-shirt Design Contest is Richie Hollins.
Designers submitting their artwork can be individuals with Down syndrome, parents, siblings or friends. This artist will receive recognition on the Buddy Walk website for the entire year! The next t-shirt design contest will be held for the 2013 Buddy Walk season.


While most walk venues will allow dogs, not all do. Please speak with the organizer in advance of your local Walk to find out if you can bring your pet with you.

Be gentle.

Friday, September 21, 2012

Just dancing and rocking that extra chromosome!

Saw this video and just had to share.  Pretty music and fantastic dancers rocking their extra chromosomes.

Be gentle.

Wednesday, September 19, 2012

New York Times Square Buddy Walk this Saturday!


Buddy Walk time!


NDSS Contact:  Jordana Stern                                             
Communications & Social Media Manager                                                                     
Local Contact: Shannon Verissimo   

Galt Residents to be Featured in Times Square in New York City     
Twin brothers, David and William Verissimo to Help Kick Off Down Syndrome Awareness Month in Unique Video Presentation   
NEW YORK, NY - David and William Verissimo of Galt, California, will appear in the bright lights of Broadway on Saturday, September 22, as part of the National Down Syndrome Society (NDSS) annual Times Square Video Presentation, which embodies the NDSS mission to promote the value, acceptance and inclusion of people with Down syndrome.
The photo of David, who has Down syndrome,and his twin brother William, was selected from over 1,000 entries in the NDSS worldwide call for photos. Over 200 photographs will appear in the video, which will be shown on the News Corporation Sony Screen, located in the heart of Times Square.  
David and William are pictured at the The Brighter Side of Downs Buddy Walk 2011 at Micke Grove Park, Lodi CA.
The Times Square video presentation kicks off Down Syndrome Awareness Month in October. The video presentation will be followed by the 18th Annual New York City Buddy Walk® in Central Park. This year, Buddy Walk events will be held in more than 250 cities across the country, as well as select international locations, in and around October. For information about the NDSS Buddy Walk Program, visit or call 800-221-4602.
About NDSS
The National Down Syndrome Society is a nonprofit organization with more than 350 affiliates nationwide representing over 400,000 Americans who have Down syndrome.  The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.  NDSS envisions 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. For more information visit
Be gentle.

Tuesday, September 18, 2012

Ted, the Reds bat boy for a day, rocks his extra chromosome

As you know, I am a huge baseball fan (Go SF!).  I am always inspired by teams that give back to the community.  The Cincinnati Reds have given back one young man that has dreams of being a bat boy.  This story just makes you smile.

In a Reds season of mostly sweetness and light, maybe the sweetest and lightest thing of all happened on Aug. 17.

Reds manager Dusty Baker fist bumps with Ted after their 7-3 win over the Chicago Cubs at Great American Ball Park.
Ted enjoys himself along with Chirs Heisey in the dugout. Ted stood next to Heisey on the field as the game opened up with the Star Spangled Banner.
Early on during an Aug. 17 home game for the Cincinnati Reds, guest Reds bat boy Ted Kremer went out to retrieve a bat. On the way back to the dugout Ted gave Reds second baseman Brandon Phillips a high five as Phillips headed to the plate. Phillips was all smiles at bat as Ted continued on his way to bat rack. The Enquirer/Jeff Swinger
Reds equipment manager Rick Stowe made a deal with Ted that he could take off his helmet when the Reds took the field as Ted hung out in the dugout. / The Enquirer/Jeff Swin
A young man with Down syndrome who really wasn’t supposed to be the batboy – not in the typical sense of the word, anyway – put some spring in the Reds’ steps.
The remarkable thing wasn’t that Teddy Kremer retrieved bats and foul balls and brought baseballs to the home plate umpire, it is that he did it with such aplomb, gusto and unbridled joy.
“They all could tell that Teddy is a guy who never has a bad day. How can you not love a guy like that?”
But if you know Ted – that’s what he likes being called, even though everybody calls him Teddy – it wasn’t remarkable at all.
Teddy was just being himself.
When Cheryl gave birth to Teddy, she was told the next day by the doctor that her son would likely never smile, probably wouldn’t talk, might not walk, and would never have more than a 40 IQ.
Those were tough words to hear, but Cheryl and her husband, Dave, were both in education, and they weren’t about to let what somebody said turn into a self-fulfilling prophecy.
By two weeks old, Teddy got occupational therapy at the pediatrician’s office so that he wouldn’t be floppy-legged. By five weeks, he was exposed to music at the Breyer School in Colerain Township, to which he clapped his hands, and looked in the mirror and was taught to look up, to strengthen his neck muscles.
By 13 months, he was in speech therapy, and soon he was matching colors and being taught to play with toys. Shortly after that, a teacher told the Kremers to “take him out, because Down syndrome kids mimic what they see, and if they don’t see it, they aren’t going to progress.”
By age 3, he was included in the regular classes at Mercy Montessori in East Walnut Hills, and he began swimming. And, oh, did Teddy Kremer progress. He walked, he talked, he smiled broadly. His personality began to emerge. By 7 he was swimming for the Mercy team.
At 16, he enrolled at Colerain High – again, in classes right along with the other kids, math and science and social studies and home economics and keyboarding at the vocational program – and competed on the swim team (“freestyle and backstroke,” he recalls, proudly) and was named student-coach on the teams for baseball and football, including the state grid champions in 2004. He rides horses on Monday nights, plays softball on Tuesday nights, does ballroom dancing on Wednesday nights, swims on Saturdays.
“I’ve always been around athletes my whole life,” he says.
He does clerical work three days a week at Hillcrest School in Springfield Township. He reads The Enquirer, follows closely the local sports team, knows as much if not more about them than anybody. He’s a diehard, easily reduced to sobs by an ill-timed loss.
So, when his parents attended a fundraiser last March at Mercy Montessori where the children of Phil Castellini, the Reds chief operations officer, attended, and they saw that one of the silent auction items was a night as a Reds batboy, they couldn’t resist.
Yes, the opportunity was listed for “age 15 to 19.” They asked Castellini if Teddy might be considered.
“He’s 29, but he acts like he’s 15 sometimes,” Cheryl explained.
“Put in your bid, and if it wins,” Phil promised Cheryl, “we’ll make it happen.”


On Aug. 5, the Kremers were asked to come to Great American Ball Park so that Ted could meet Phil Castellini and Reds equipment manager Rick Stowe.
Before that, Stowe had met with Castellini’s executive assistant, Diana Busam.
Stowe is a warm, effervescent, fun-loving guy, but he’s also steeped in the rituals of the clubhouse and dugout, and he wondered aloud about the wisdom of injecting anything offbeat into it. The Reds had done honorary batboys before games, but rarely during it, maybe once or twice a year tops, he told The Enquirer.
“C’mon, Diana, we’re not going to start a three-ring circus out there, are we?” asked Stowe. “We’re in a pennant race.”
“Let’s just see first,” Busam replied. “Let’s meet him and see where we are.”
Luke Stowe – Rick’s son and the team’s regular batboy – gave Ted a tour of the stadium. They happened upon one of the Reds broadcasters.
“Oh my God – Jim Kelch!” blurted out Ted, giving Kelch a hug.
Ted also met Marty Brennaman.
“You look pretty good without hair,” Ted told him.
Ted walked by the Reds’ video room and saw a familiar face inside.
“Hey, Brook Jacoby!” Ted exclaimed, giving him a hug.
Luke gave Reds officials – including his dad – the big thumbs-up on Ted as batboy.
Meanwhile, the Reds players wanted to know, hey, who’s the new kid on the block?
“Teddy already knew everybody, apparently from what he’d read and seen on TV,” Rick Stowe said. “Drew Stubbs fell in love with him. Todd Frazier, Brandon (Phillips), Wilson Valdez, Heisey, Bruce, Votto, Dusty (Baker). Everybody. They all could tell that Teddy is a guy who never has a bad day. How can you not love a guy like that?”
Ted was outside the Reds clubhouse talking to Phil Castellini when another man approached. Cheryl Kremer didn’t recognize him.
“Mr. Castellini!” Ted exclaimed, holding out his hand and introducing himself to Bob Castellini, the Reds chief executive officer.
“You’re doing a great job with the ballclub,” Ted told the Reds owner.


On the night of Aug. 17, the Kremers returned to the ballpark. Dave and Cheryl didn’t know quite what to expect.
Ted had a few questions.
“Mr. Stowe, do I have to wear this helmet?”
Rick Stowe: “How about this, Teddy? I’ll make you a deal. You wear that helmet when we’re up to bat. When the other team’s batting, you can sit on the bench with the players, and you don’t have to wear the helmet.”
During the national anthem, Dave and Cheryl stood with hands over thumping hearts as Teddy stood between Reds manager Dusty Baker and outfielder Chris Heisey outside the Reds dugout. The Kremers watched as Ted mistakenly removed his Reds cap with his left hand and held the cap over his heart.
“The other hand,” Heisey said softly, as Ted picked up the cue and moved his right hand to the cap, and repositioned it over his heart.
On his right arm was a black wristband, a gift from Todd Frazier.
When it came time to go out for the pregame meeting to exchange lineups, Dusty Baker didn’t tell Teddy what was up.
All he said was, “Bring these four balls to the umpire, Teddy.”
And that is how Ted found himself at home plate, with Baker’s arm around him and Baker introducing him to the umpires, shaking their hands one-by-one, a big grin on his face. Ted’s parents looked on in wonder.
Early in the game, Ted went out to retrieve a bat. Who should pass Ted on the way back to the dugout than No. 4, Brandon Phillips, on his way to the plate. Ted gave him a hard high five, causing Phillips to bat with a grin as Ted continued on his way to bat rack.
Whose bat was it, Ted? Ted mentally flipped through the Reds batting order that night, which was the order so many nights when Votto was out with a knee injury.
“Let’s see,” he pondered. “Cozart ... Stubbs ... Phillips. It was Stubbs’ bat, the second hitter.”
Later, Phillips explained his delight over Ted’s exuberance.
“People are blessed in their own way,” said the Reds second baseman. “Teddy came in here and blessed us with his energy and his presence that day: Enjoy life, be yourself, go out and play hard. Give it all you got. That’s Teddy. He’s a reminder to us all.”
When Frazier hit a towering home run in the fourth inning to score Bruce, Frazier circled the bases and, upon entering the Reds’ dugout, bellowed, “C’mon, Teddy, give it to me!” And player and batboy exchanged a big hug.
Reds pitcher Mike Leake came down to the clubhouse to get something during the game and ran into Stowe.
“I’ve only got a second,” Leake told Stowe. “I gotta get back to Teddy.”
With two outs to go in the top of the ninth and the Reds leading 7-3, Teddy began to applaud at the prospect of certain victory. Joey Votto, in uniform but out of action with a knee injury, sat down next to Teddy.
“We wait until we get three outs before we count this one as a win,” said Votto, gently.
Teddy took the hint and waited for the final out.
And what did Votto tell you then, Teddy?
“He said, ‘I love you, Ted. Thank you for everything.’ ”


Years from now, Reds players will remember the Cuban Missile emerging as their closer, rookies Todd Frazier and Zack Cozart having their coming-out parties and the Reds’ five starting pitchers somehow miraculously not missing a turn. The player will also remember a 22-3 stretch, much of it while Votto was out.
But they’ll remember something else, too. They’ll remember the night they met Teddy Kremer.
“He’s always smiling, always joking, always having fun,” Heisey says. “Everybody likes being around somebody like that. He’s cool. I wish he’d come back more.”
The Reds, who were down 3-1 going into the fourth inning, went ahead 6-3 on home runs by Ryan Ludwick and Frazier, and back-to-back extra-base hits by Cozart and Stubbs. Jay Bruce added an insurance homer in the fifth. Jose Arredondo, Jonathan Broxton and Aroldis Chapman closed out the quality start by Bronson Arroyo.
Teddy knuckle-rapped with manager Baker, who pulled the lineup card from the dugout wall – the card by which Baker manages the comings and goings of both teams’ players – and signed it, “To our good luck charm, Teddy Kremer. – Dusty Baker,” and handed it to Teddy.
Teddy was exhausted. All those steps up and out of the dugout to retrieve bats and balls had taken their toll.
And three weeks later, the experience was clear.
“The players,” he answered, when asked what was his favorite memory.
Anything surprise you?
“The fans cheering me on.”
Favorite thing in the dugout besides the players?
“The Powerade and the bubblegum.”
When Ted’s parents got home from the ballpark that night, they noticed their necks were quite sore. All from trying to keep up with Teddy’s moves.
“Nerve-wracking,” recalls Cheryl. “We didn’t know he was going to be doing any of that. It was amazing what the Reds let him do.”
And, yet, Teddy had been relaxed as could be – well, at least after the national anthem. After the anthem, it was like being back on the Colerain sidelines with Coach Kerry Coombs.
From the end of that night, Teddy remembers one final exchange.
“Mr. Stowe, I want to thank you very much for having me down here. I had a great time.”
“I guess you did, Teddy, I guess you did,” responded Rick Stowe.
“But not as great a time as we had.”

Be gentle.

Saturday, September 15, 2012

Actors with Down Syndrome raising awareness

Raising awareness and bringing Down Syndrome into mainstream media, I am excited to see this trend continue with one of my absolute favorite shows Glee introduces another character with Down Syndrome.

Read about the newest addition to the Glee story line.

Actors with Down Syndrome Raise Awareness

PHOTO: Lauren Potter, who plays Becky Jackson on Glee, with Jordyn Orr (Robin Sylvester) Gail Williamson and Robin Trocki (Jean Sylvester).

When Gail Williamson was pregnant with her son Blair in 1979, there was no one on TV with Down syndrome to help make the diagnosis less scary.

Today, doctors tell parents that their babies will grow up and be like "Becky," a character on "Glee" who has Down syndrome -- and quite a bit of sass as she rocks a cheerleading uniform at the fictional William McKinley High School.
"It changes it for parents," said Williamson, the woman who connected "Glee" with Lauren Potter, the actress who plays Becky; Robin Trocki, the actress who played Sue Sylvester's big sister, Jean; and Jordyn Orr, the baby who made her "Glee" debut as Sue's daughter Thursday night. They all have Down syndrome.

And the ladies of Glee are not alone, said Willliamson, who now runs Down Syndrome in Arts and Media after spending 12 years at the California Governor's Committee on Employment of People with Disabilities. Actors with Down syndrome will also be on "Shameless," "American Horror Story," "Blue Bloods," "Legit" and "The New Normal" this year, changing the public's perception of the syndrome one viewer at a time.
Down syndrome hasn't been this prevalent in entertainment since Chris Burke played Corky Thatcher on ABC's "Life Goes On" from 1989 through 1993, Williamson said, adding that she remembers how life changed for Blair after it debuted

"Waiters would turn to him and say, 'What would you like to eat?'" she said, adding that they'd previously asked her what he wanted instead. "People didn't realize they could talk to that face … I saw a change. I saw the difference. And I saw it again after 'Glee.'"
Potter, 22, was a baby when "Life Goes On" was on television, so she said she never had a television role model who had Down syndrome. But now, people will run across parking lots and line up for her autograph as if she's Santa Claus.

"I just felt like I wanted to cry," Potter said. "They were saying that I was their inspiration. These fans are really my heroes."
Her mom, Robin Sinkhorn, said the best thing is when college and high school students aren't afraid to say hello, and tell Potter that she inspired them to learn more about Down syndrome. Potter is now part of an anti-bullying campaign and is on President Obama's Committee for People with Intellectual Disabilities.
"It's pretty amazing what this kid has done, and this gift that 'Glee' and the producers of 'Glee' have given her," Sinkhorn said. "She's reached out to a lot of people."
To the National Down Syndrome Society, the awareness from TV shows is a huge help because it generates interest in their website, research and fundraising, said Julie Cevallos, the organization's vice president of marketing. She said web traffic data to isn't available as far back as late 2009, when Potter made her "Glee" debut, but they've seen a 10 percent increase between 2010 and 2011.
Considering that the average life expectancy for a person with Down syndrome went from 25 in 1983 to near 60 today, according to NDSS, there's plenty of health research to be done.
For instance, Robin Trocki had to be written off "Glee" because she has Alzheimer's disease, which is common in people with Down syndrome because the gene is located on chromosome 21, of which people with Down syndrome have three copies instead of two. (Sue's new baby on the show is named Robin for her.)
NDSS is also working on a bill that would save families tax money if they include a person with Down syndrome.

Sue’s Infant Daughter Is Just Like "Any Other Baby": How Glee Succeeds in Its Portrayal of Down Syndrome — Exclusive

Sue Devises a Plan in Glee Season 3, Episode 20: “Props”
During the Glee Season 4 premiere, the world was introduced Robin, the tiny infant daughter of Jane Lynch‘s snarky cheerleading coach Sue Sylvester.

While nothing was mentioned in the episode, actress Jane Lynch earlier revealed that little Robin was born with Down syndrome — and ABC Newsreports that Jordyn Orr, the actress who plays baby Robin, also has Down syndrome.

Speaking exclusively to Wetpaint Entertainment, Diane Grover of the International Down Syndrome Coalition says she “loved” the way Glee has chosen to handle baby Robin’s storyline.

“It was so nice to see that everyone treated Robin just like they would any other baby,” says Diane, the executive director of the IDSC. “Our children are children first, and they did a great job of showing that by not over-emphasizing her diagnosis. I greatly appreciated that. There is a lot to be said about what was not said! Funny as that sounds.”

Robin wasn’t introduced as a baby with Down syndrome, she was simply a baby. Nothing more needed to be added.
Sue Sylvester and Becky Jackson
“Too often too much is made of a diagnosis, which creates misgivings and fear in people. Sue has been around individuals who have Down syndrome before, her sister, and Becky, so she knows there is nothing to fear. That is exactly what that scene said to the audience,” Diane adds.

However, no effort was made to hide who Robin is, either. “I especially loved how they focused in on her sweet little face, with her beautiful features that are so widely recognized for those who have Down syndrome,” Diane gushes. “Their close up created no doubt for the audience that Sue's "love of her life" has Down syndrome.

During the episode, Sue tells Kurt (Chris Colfer) that she chose Robin’s name, in part, because it reminds her of hope and springtime. “Babies do bring new parents hope. A child that has Down syndrome is no different,” Diane says.

“I loved the way they handled the whole thing. Robin's diagnosis of Down syndrome is not a tragedy, but instead, a source of hope for Sue. [It’s an] Absolutely beautiful way to introduce their newest little character.”

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Be gentle.

Thursday, September 13, 2012

Down Syndrome Awareness Month is fast approaching

and there will be a lot of celebrities and charities supporting us all in the community.

How can you promote Down Syndrome Awareness month too?

October 2012 marks the return of National Down Syndrome Awareness Month to the United States.

The National Down Syndrome Society (NDSS) was instrumental in establishing this month of awareness over thirty years ago in concert with it’s mission to be national advocate for the value, acceptance and inclusion of people with Down syndrome.
Since 1995, NDSS has added to the annual celebration through the National Buddy Walk Program, which seeks to spread the NDSS mission on the local level with over 250 Walks expected in 2012. Last year, over 285,000 people participated in Buddy Walks throughout the country, which together raised over $11 million for local and national initiatives.
The Buddy Walk is supported by some great celebrities who lend their talent to the program local and nationally.
  • The National Buddy Walk PSA stars TV Hosts Nancy O'Dell and Meredith Vieira, Actor and NDSS Goodwill Ambassador Chris Burke, Actress and Self-Advocate Andrea Friedman and Actor John C McGinley.
  • Emmy-award winning children’s TV stars, the Imagination Movers, have participated in a new Buddy Walk video for the 2012 season. The Movers will also be promoting select Buddy Walks that take place along their 2012 Rock-O-Matic fall tour.
  • Bestselling author, restaurateur and Emmy Award-winning Food Network television star Paula Deen will be participating as Grand Marshal of the Lowcountry Down Syndrome Society’s Buddy Walk in Savannah Georgia.
“People with Down syndrome are capable of achieving and advancing in so many ways, they just need the opportunity. Thanks to organizations like NDSS, I see them getting that chance to share with the world the abundance they have to offer and I hope that opportunity grows every day,” says Entertainment Tonight Co-Host Nancy O’Dell, who stars in the National Buddy Walk PSA. The PSA will air nationwide at all Regal Entertainment Group theaters from October 1 – 14.
NDSS recently relaunched its website, which now features improved design and offers a more user-friendly experience. In honor of Down Syndrome Awareness Month, NDSS invites everyone to visit the site, learn from and share its up-to-date resources.
  • NDSS offers a Down syndrome fact page and preferred language guide to learn about Down syndrome and how to speak properly about people who have it.
  • My Great Story, the largest NDSS public awareness campaign, aims to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them. All are invited to share a story or vote and comment on those already in the collection. There is a section exclusively for Buddy Walk stories and there will be a Down Syndrome Awareness Month section added in October.
  • Each year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of the Times Square. This year over 200 photos were chosen from over 1,000 submissions to be a part of the Times Square Video. It will air on the morning of the NDSS Flagship Buddy Walk in New York City on September 22 and will be posted on our website shortly after.
  • Links to NDSS on FacebookTwitterPinterest and YouTube are available on each page. Follow for the latest updates throughout Down Syndrome Awareness Month. Visitors can also follow Buddy Walk-specific feeds on Facebook and Twitter.

Read more:

Be gentle.

Wednesday, September 12, 2012

Can you help a family in need? Cancer strikes.

Families with twins are special.  And it can also be a little crazy (and fun) to have two babies born at once.  What if one (or both of those babies) are born with an extra special chromosome?  What happens then?  The family is spun into a whirl that they may not be prepared for.  Or the family may be prepared for the birth of their twins and know one is going to born with Down Syndrome.

But no family is prepared when CANCER strikes.

I want to tell you about a special family.  Their beautiful baby boys were born June 28, 2005.  Brandon and James were welcomed into their family.  Brandon was born with an extra chromosome.  On July 7, 2012, this wonderful family's world received a word that no family wants to hear.......   CANCER.  Brandon and family began fighting for Brandon's life.

And now my friends, this is where you come in.  Can you help support this family?  They need financial support.  Brandon's mom has set up a fund to make their fight a little easier.  Can you help with a financial donation, a prayer, or kind thought?

No family should have to face this horrible illness alone.

Help Brandon Fight Cancer

This fundraiser ends on October 29th, 2012
Beneficiary: Linda Blackwood

Won't you help us fight this battle with cancer? We would really appreciate your support!

Brandon Blackwood is an amazing little boy. When doctors discovered that Brandon would be born with Down syndrome and severe hydrocephalus (water on the brain), doctors suggested that I terminate my pregnancy or choose "selective termination", so that his twin brother might survive. His father and I decided that was not an option and continued the pregnancy. The doctors continued to warn that even if Brandon was born alive he would not survive or would be severely mentally delayed and need to be fed through a tube. Two healthy, happy twin baby boys, Brandon and James, were born 4 weeks early on June 28, 2005. About a year later, Brandon received shunt placement surgery for his hydrocephalus and has not had a problem with it since. Brandon learned to eat, walk and talk and became quite the little character hugging almost everyone he meets. Our world came crashing down on July 7, 2012. A couple of days before Brandon became very lethargic, not wanting to wake up. We went to see his pediatrician and we were rushed by ambulance to Rainbow Babies and Children's Hospital. A shunt malfunction was suspected, but tests confirmed my worst fear, that he had leukemia (ALL). Since then it has been an endless cycle of hospital stays and visits. Brandon must endure chemotherapy, even though he is now in remission, for about 2 more years to make sure the cancer does not return. The biggest issue right now is that Brandon is not well enough to attend school or daycare so I have only been able to work a few days since this has happened. Bills are piling up and I am facing foreclosure. I have 2 other children and I want to keep all of us in our home. Brandon's father lost his job around the time he was diagnosed, so I am only receiving a tiny amount of child support. Won't you help us get through this difficult time?

Be gentle.

Tuesday, September 11, 2012

47 Strings. A story about Tessa

Here is the opportunity to educate kids about Down Syndrome.  47 Strings is a new picture book about a little girl with Down Syndrome by Becky Carey.

Read about this wonderful book and if you can, help this family get this book published so they can help us all with awareness and education.

A children’s picture book about the remarkable lessons to be learned from a little girl named Tessa, who was born with Down syndrome.
    Hello—my name is Becky Carey. I am the author of the children’s book, 47 Strings: Tessa’s Special Code. I was inspired to write this book by the birth of my beautiful baby daughter, Tessa, who was born with three 21st chromosomes instead of the usual two—otherwise known as Trisomy 21 and Down syndrome.
    Down syndrome is a genetic condition that causes delays in physical and intellectual development. It occurs in one in every 691 live births and is the most frequently occurring chromosomal disorder. People with Down syndrome have 47 chromosomes instead of the usual 46 – which explains the title of my book.
    One of the first things we needed to do was tell Tessa’s 7-year old big brother, Casin, about her Down syndrome diagnosis. We wanted him to be prepared if and when people asked him questions. Mostly, we wanted to make sure that he learned about Down syndrome in a manner that was relaxed, understandable and heartfelt. 
    Casin loves stories, I wrote this story with him in mind—and read it to him as he sweetly held Tessa’s hand. We recorded that moment and posted it on YouTube and on our blog. It was perfect and real.
    Check out the blog at:
    Our YouTube video has reached over 10,000 views because of people like you…who have shared it with friends, family, or on your Facebook pages. THANK YOU! Keep spreading the joy and the good word! 
    Now we need your help to publish 47 Strings: Tessa’s Special Code as a children’s picture book–to inspire, help guide, and reassure parents and families all over the world that kids with “47 strings” just means there is a little more of them to love. The money raised will be used to cover the cost of professionally illustrating, editing, publishing and printing 2,000 beautiful hardcover books.
    BUT…we only have 30 days to reach our goal! So we need you to do these three simple things:
    1. Pledge any amount of money!
    2. Spread the word by sharing this with others!
    3. Receive great incentives!
    Without you, we won’t reach our goal and make it possible to help other families like mine as they start their journey. Help us spread understanding and awareness of Down syndrome.
    “There are only a few books out there for younger children about Down Syndrome. I especially like how Tessa's story is more positive from the parents’ perspective. I could definitely see this book being utilized by:
    - Parents to educate other siblings, and their friends, in an easy-to-understand way.
    - Classrooms to educate peers of a child with Down syndrome.
    - Hospitals and pediatricians to give to parents upon diagnosis of Down syndrome.”
    – Sue Dahlen, mother of 3 girls including middle daughter, Caroline, who has Down syndrome
    Special thanks to Ann Gorgen, photography; Jason McGraw, videography; and Carrie Stidwell O'Boyle, writer/editor.

    Be gentle.