An Awe-Inspiring Showing of Support: another truth about Down syndrome walks

by Mark Leach from DownSyndromePrenatalTesting.com:

Tomorrow is my local organization’s annual charitable walk to kick off October being National Down Syndrome Awareness Month. I can’t wait.

Last week, as part of a blog hop, I posted “The Truth about Down Syndrome Walks.” In that post, the truth shared was that Down syndrome walks can be overwhelming. And, they indeed can be for the reasons I mentioned in the earlier post. But here’s another truth:

Down syndrome walks are an awe-inspiring showing of support.

We’re now less than 24 hours away from our annual walk, and I must admit that I am eager with anticipation for tomorrow. This is something I could not have fathomed before our daughter was born.

Before then, I had occasionally participated in other charitable walks. My firm sponsors many of them and I would often come out as a show of support for our firm team. One year, my participation went beyond the call of duty by my entry into a “Dude Looks Like a Lady” contest for the American Heart Association’s Walk. I believe photographic evidence is still out there in cyberspace.

October is Down Syndrome Awareness Month!

from the NDSS:

October is Down Syndrome Awareness Month!  Down Syndrome Awareness Month is here! At NDSS we are so excited to celebrate. Here are just a few great ways to get involved:     It's Buddy Walk® season! Most Walks are held in and around October in honor of Down Syndrome Awareness Month. Walk together for Down syndrome! The 2013 Times Square Video is now available to view on the NDSS YouTube channel and to purchase for your collection (you can also see what it looked like on the big screen when it aired live)!  Are you inspired by someone with Down syndrome? Share your story with the My Great Story campaign!   Compete, celebrate or create a unique fundraising campaign with NDSS Your Way!    Share the many NDSS resources, including our Down syndrome facts, myths & truths and preferred language guide with friends and family, teachers, colleagues and via social media!    Check out and share our new "Get to Know Me" inclusion posters and lesson plans in your local schools!  Become an NDSS DS-Ambassador and advocate for people with Down syndrome with members of Congress!     Much more where these came from! For more information and other ideas, check out our Down Syndrome Awareness Month page at ndss.org/DSAM2013.

Fraternity holds Buddy Walk

by Jelissa Neal from the East Tennessean:Many student organizations are starting the year off right, giving back to the community and raising money for a great cause. One organization in particular is Sigma Alpha Epsilon (SAE).The SAE Fraternity held their annual Buddy Walk on Sept. 7.The Buddy Walk is an event that teams up with the local organization FRIENDS (Friends Reaching, Inspiring, and Educating Neighbors about Down Syndrome), a Johnson City affiliate with the National Down Syndrome Society (NDSS) and SAE’s local philanthropy. The NDSS was also a sponsor of this event.The Buddy Walk raises money by allowing people to pledge per lap the number of laps that a team walks. It was created by NDSS in 1995 to celebrate Down Syndrome Awareness Month in October.

Paula and Jamie Deen named grand marshals of Buddy Walk

by Savannah Morning News:Savannah’s best-selling celebrity chefs and cookbook authors, Paula Deen and Jamie Deen, will serve as grand marshals of the 2013 Buddy Walk.
The eighth annual event will be held at 10 a.m. Oct. 5 in Forsyth Park. The Deens will lead participants in the one-mile fundraiser to benefit the Lowcountry Down Syndrome Society.
Thousands of people are expected to attend the event, which raises awareness and funds for local programs, including Camp Buddy, that benefit people with Down Syndrome and their families.
Jamie Deen sits on the society’s board and, with Paula Deen, has served as Buddy Walk grand marshal several times.

For families, time to come together at Buddy Walk

by Danielle E. Gaines from the Frederick News-Post: 
For the Jones family, Saturday's Buddy Walk was a family reunion in more than one way.
“We come back every year. We've seen the same friends each year. We've seen the kids grow from young children into teenagers,” said Wallace Jones, of North Wales, Pa.
His has been meeting at the walk for the last 11 years, starting with the birth of his daughter, Hailey, who has Down syndrome.
On Saturday, Wallace gathered with his wife, Tina, all three of their children, his parents from New Castle, Del., and his sister Waynet Jones, who lives in Frederick.
“We all come together here,” said Waynet Jones, who is a board member of F.R.I.E.N.D.S., the locally based Down syndrome advocacy group that has organized the walk for the last 12 years.

Zumbathon a day of fun for great cause

Written by Jon Bleiweis from the Beachcomber on Delmarva Now.com:
When Jessica DuBois found out 10 months ago that her newborn daughter, Glee, had Down Syndrome, she was in shock.
“For nine months, you go thinking you’re going to have a perfect, beautiful baby girl,” she said. “I hadn’t gotten to hold her when I was told.”
But since then, she said her eyes have been open to a whole new world — a new way of thinking, a new way of love and acceptance, and a new way of advocacy.
When she first would bring up Down Syndrome among family and friends, she said, she would only hear negative things. But DuBois, 26, has turned them all into positives, to the point where she tells loved ones not to be sorry and that it’s not a bad thing.
According to Down Syndrome Association of Delaware, one in every 691 babies in the nation is born with the condition, which gives an individual a full or partial extra copy of chromosome 21, which alters the course of one’s development. There are more than 400,000 people in the country living with Down Syndrome.
While there is no cure for the condition, DuBois and fellow members of the Down Syndrome community want the public to be more accepting.
“We want people to know that these children are more alike than different,” she said. “They’ll accomplish anything any other child would, just on their own time. They’re still full of joy and full of life.”
As a way to help spread awareness of Down Syndrome, DuBois and her cousin, Robin Wright, a local Zumba instructor, will host a Zumbathon fundraiser at the Sussex County YMCA, which will take place Sunday, May 5. Wright will be one of eight local Zumba instructors who are expected to participate in the event.
DuBois said she hopes it will become an annual event to help spread the word about the disorder, and so far, it has been well-received by local businesses.
Door prizes, raffles and a silent auction will take place, as well as two hours of nonstop high energy dancing.
In addition to teaching Zumba classes, Wright works at Lotus Blossom Learning Center in Lewes, where two of her daycare children have Down Syndrome.
“We know now that therapy and intervention is most important for these kids to strive and go mainstream and be in normal classes,” she said.
“We need to get the word out.”
While the event will be free, donations will be accepted at the door. All proceeds will go toward The Bumble Glee Hive, Glee’s team for the 10th annual DSA Buddy Walk.
DuBois and her daughter have taken part in two buddy walks already, and they’re eagerly anticipating the Delaware walk May 19 in Newark.
The walks have been a boon of support for DuBois and Glee.
Each time, they’ve had more than 25 supporters join them, including family members from Philadelphia that DuBois hadn’t seen in years.
“Glee knows more people now,” she said. “Everyone knows Glee. She’s a total celebrity. It’s a great feeling to know that family and friends support you.”

Troops hold 'Buddy Walk' in Afghanistan for fellow soldier's son

Troops hold 'Buddy Walk' in Afghanistan for fellow soldier's son

from Fox 10 TV by Joe Salvatore:
An Alabama Army National Guardsman whose son died in September received a grand gesture from his unit in Afghanistan.
Jeff and Kelly Carroll already have three kids, their fourth child, Lewis, was born on July 28, 2011.
“He came three weeks early, and we found out at birth he had Down Syndrome. And he also had something called Hirschsprung's Disease, which is something with the bowel; he can't go to the bathroom,” said Kelly Carroll, Lewis’ mother.
Lewis spent the first two months of his life at the USA Children's and Women's Neonatal Intensive Care Unit.
He had an emergency Colostomy to help with symptoms from Hirschsprung's Disease .
“He came home September 26, 2011, and he's been home just thriving,” said Kelly Carroll.
In January, Lewis had another surgery to reverse his colostomy.
“And they had complications, where he almost died.  He was in the PICU for a week on a ventilator,” said Kelly Carroll.
Lewis pulled through and endured more surgeries this year to correct his problems.
His last operation was in July; he came home and was doing well.
“He got sick one day and died the next,” said Kelly Carroll.
“Nothing can prepare you for that, it's indescribable how you feel,” said Army National Guard 1 ^st Lieutenant Jeff Carroll, Lewis’ father.
The Carroll’s became involved with the Down Syndrome Society of Mobile County when they found out their son had Down Syndrome.
They walked in its annual Buddy Walk when Lewis was just a few months old and did it again this past Saturday, October 20th, 2012 to honor him.
“Members of my battalion found out about the Buddy Walk, one of them Captain Glenn Smith. He decided to organize his own Buddy Walk, there in Afghanistan,” said Jeff Carroll.
Hundreds of military men and women from every branch put on boots and hit the sand at night and walked during the same time the Carroll’s walked in Mobile’s Buddy Walk.

Photos from the Buddy Walk Afghanistan can be found here.

“I was just speechless, what can you say.  We call it the Guard Family and it just says it right there,” said Jeff Carroll.
Jeff Carroll says his National Guard unit in Afghanistan is a combat unit and he was moved by their ability to put a mission on hold and walk for his son.
The Carroll’s said they raised $16,000.00 this year for the Down Syndrome Society and plan to stay involved with the organization.

If you would like to donate to the Down Syndrome Society of Mobile, click here .

How mosaic Down syndrome can be missed

by Shannon Blaeske from Lifes Litte Surprises:

Parents are crazy. Especially moms. And especially new moms. Every sniffle raises alarm, every odd movement or out of routine behavior causes suspicion. So it comes to no surprise to me that doctors have quick answers to all these tiny concerns. I am sure the pediatrician night hot lines ring off the hook all night long from worried moms over-reading into the common cold. But what happens when mothers intuition is right? What happens when the rare, not likely cause of the sniffle is the cause? What happens when doctors dismiss symptoms because they are unaware of what they may be indicating?

For two families, just that happened. Both Holly and Sarah knew certain things were not right with their daughters. Numerous small health concerns kept rising up, and each time, they were dismissed with the most common answers.  For Holly, the answers she was given for the cause her daughters constipation and projectile vomiting did not sit right. And for Sarah when her daughter ended up having a very rare congenital subglottic stenosis, she too questioned if something else could have caused it. But who were they to question doctors? They trusted their opinions. They trusted that they knew best.

What you need to know about children with Down syndrome

by Anne Hart from Savannah Now:
When it comes to explaining her son’s Down syndrome to the general public, Wendy Tobiasz’s approach is refreshingly simple and downright honest: Joshua is “more alike than different,” she says.
“A child with Down syndrome is much more like you than different from you,’’ the Wilmington Islander said of her son, a first-grader at May Howard Elementary. “They love their family and friends and want to be loved back. They have things they are great at and things that are hard. They are funny, silly, energetic, naughty and sweet. They get their feelings hurt. They are proud when they accomplish something good. They get into trouble. They want to fall in love, have a job and live independently — and the list goes on and on.”
Which is why it makes so much sense that children with Down syndrome are in mainstream classrooms and playing mainstream sports. Many adults with the condition have jobs and live independently.
“If you feel it, struggle with it or want it, then someone with Down syndrome does, too,” Tobiasz said.
A photo of Joshua, 7, smiling in his karate uniform was among 200 chosen from 1,000 worldwide to appear in the New York City Buddy Walk Times Square video presentation this year. The video presentation will be followed by the NYC Buddy Walk.
The goals of the Buddy Walks — held in 250 cities nationwide in October, including Savannah — are to promote acceptance and inclusion of people with Down syndrome and to positively influence local and national policy and practice.
Despite huge efforts for public education about Down syndrome, Tobiasz said, unfortunately many antiquated stereotypes persist — including that children with DS can’t learn or “do” what typical kids do.
Her son and other children with DS daily shatter those stereotypes.
Joshua’s knack for sports — mainstream karate, basketball, T-ball, soccer — particularly helps to extinguish any misconceptions.
“People with DS are life-long learners,” Tobiasz said. “They may need adjustments in their learning style or to progress at a slower pace, but they can learn and ‘do’ just about anything.”

What parents need to know
In anticipation of the Seventh Annual Lowcountry Down Syndrome Society Buddy Walk Festival in Forsyth Park on Oct. 6, local parents of children with Down syndrome shared what they say parents of a child newly diagnosed with the condition need to know.
“First and foremost, they should be congratulated on their new gorgeous baby,’’ Tobiasz said. “Then they should simply love and care for him or her as any baby needs. The path they find themselves on isn’t the path they expected, but it is a beautiful and magical path. The emotions are overwhelming in the beginning, but rest assured that they will love their baby fiercely.”

Joe Marchese, a well-known local advocate for Down syndrome awareness, treasurer of the Lowcountry Down Syndrome Society and the father of three girls including Ella, who has DS, shared the following tips for parents:
1. Start speech therapy at 3 months old. “I know that they cannot speak, but the muscles needed for speech in the mouth and tongue need to be developed.” Always use a sippy cup with small round spouts.
2. Encourage swinging and spinning during play time. The sensory movements develop connections in the brain.
3. Communicate appropriate stages of development. For example, tell her grandmother that Ella will not walk until she is 3. Then when she walks at 2, it is a great success.
4. Teach your child sign language. Knowing where it hurts is a great help in making it better.
5. Find a doctor who loves all children.
6. Watch Aimee Mullins’ “The Opportunity of Adversity” on TED.com.

7. Stand firm on inclusion.
8. Remember that your child is perfectly made.

And I have to add: Join the Lowcountry Down Syndrome Society, because this group’s enthusiastic, informative and positive families are certain to be a huge support. Contact the Lowcountry Down Syndrome Society at ldssga.org or email jmarchese@ldssga.org

Lowcountry Down Syndrome Society Announces October 6 Grand Marshal for the Buddy Walk: Paula Deen

from The Creative Coast:
Join Savannah’s own bestselling author, restaurateur and Emmy Award-winning Food Network television star Paula Deen as she laces up her sneakers as Grand Marshal of the 2012 Buddy Walk on Saturday, October 6, 2012. Deen will be leading walk participants in the one mile fundraising event around historic Forsyth Park in Savannah, Georgia.

Thousands of people are expected to attend the event, which raises awareness and funds for local programs, including Camp Buddy, that benefit people with Down syndrome and their families. Last year’s LDSS Buddy Walk welcomed over 4,000 participants.

Paula Deen’s son Jamie Deen, also a bestselling cookbook author and tv personality, sits on the LDSS board, and has served as Buddy Walk Grand Marshal the past two years.

“As Jamie will not be in Savannah for the Buddy Walk this year, it is my great honor to take his place as Grand Marshal,” said Paula Deen. She added, “I am excited to be part of this uplifting celebration and lend my support in promoting awareness and acceptance of folks with Down syndrome. I’m looking forward to a strong turn out of my Savannah and Lowcountry neighbors and friends at the Buddy Walk!”

The Buddy Walk Program welcomes participants of all ages and abilities. Bring your carriage, strollers, wheelchairs, little red wagons and pets. Don’t leave anyone behind as we stroll around Forsyth Park. The goals are to promote acceptance and inclusion of people with Down syndrome and to positively influence local and national policy and practice. Last year alone, Buddy Walk events nationally raised more that $11.2 million to benefit education, research, and advocacy initiatives, as well as the Night of Champions, Camp Buddy and many other services right here in the Lowcountry and Coastal Empire.

The walk begins at 10:00 am. The Family Fun Festival begins immediately following the walk. The Festival will feature all kinds of activities such as face painting, pumpkin painting,the BOO Boutique, bouncy houses, games, music and refreshments and last until 2 PM. The LDSS Buddy Walk is one of more than 300 Buddy Walks taking place across the country this October to celebrate Down Syndrome Awareness Month.

Registration forms for the walk are available online at www.ldssga.org or sign-up starting at 8:30 AM day of the event. Registration is $12.00 per person or $40.00 for a family of four. Registration includes this years limited edition T-Shirt, Lunch and admission to the festival. To learn more, visit www.ldssga.org or contact John or Candy Bogardus at (912) 728-8505.

About the Lowcountry Down Syndrome Society: The Lowcountry Down Syndrome Society (LDSS) is a support group to benefit people with Down Syndrome and their families through local leadership in support, outreach, education and advocacy. Meetings are held every 4th Tuesday of the month, typically with a guest speaker and social time for families to meet and interact with one another. We encourage people to bring their children. We are an affiliate of the National Down Syndrome Society. www.ldssga.org

2012 Buddy Walk on Washington update

The Buddy Walk on Washington begins tomorrow with planning sessions and continues into Thursday with Congressional visits.

Key initiatives being discussed with members of Congress and their staff are:

1. Sponsorship of the Achieving a Better Life Experience Act (ABLE)
2. Increasing Down Sydrome NIH Research Funding & Down Syndrome Research Infrastructure
3. Joining the Congressional Down Syndrome Caucus

from the D.A.D.S. National Update:

What’s new in the 2011-2012 ABLE Act?

• This is the third Congress that the ABLE Act has been introduced and there have been some specific changes that were made to the bill for this Congress. Some of the changes would result in providing more flexibility in the account along with a clear path to bring the accounts to the marketplace. Others have been added to help bring down the costs to the federal budget. Most importantly, all of the changes give the bill a much better chance to passing into law.
• The resulting "ABLE" account would now fall under the 529 program. That means that the tax free, fraud protection, account limits, reporting provisions and rollover provisions that apply to 529’s would now apply to the ABLE account.
• A provision was added that suspends the beneficiary’s SSI check during any period of time the account has assets over $100,000. It is important to note that although the payment is suspended the individual does not lose their eligibility
to receive the payment, so that when the assets are spent down it can be reinstated.

NDSS Call for Awards 2012

from the NDSS: NDSS Call for Awards 2012	More Info
Accepting Nominations for the Annual Buddy Walk on Washington
Down syndrome Community: As part of our annual Buddy Walk® on Washington, the National Down Syndrome Society seeks to honor those in the Down syndrome community that work tirelessly throughout the year as advocates, leaders and change makers in the area of public policy and advocacy for people with Down syndrome. Each year, we present an award to: A self-advocate An individual leader (this could be an affiliate leader, parent/family member, professional, expert etc.) A Down syndrome advocacy group (this could be a Buddy Walk, GAC, committee, affiliate, etc.) Currently, we are requesting nominations for our 2012 awards!  If you wish to nominate an individual or group, please do the following: 1)      Submit an email nomination to Sara Weir (sweir@ndss.org) by December 15 2)      Nomination should include the following: Your name and contact information Nominee along with organization or individual contact information Brief summary explaining why this person/organization should receive the award For a list of 2010 and 2011 NDSS honorees, please check out:   http://www.ndss.org/index.php?option=com_content&view=article&id=263&Itemid=136 Winners will be decided by committee and notified of the award.  Awards are presented at the Buddy Walk® on Washington in Washington, D.C. on February 29, 2012.  Ideally, the award recipient will be able to accept the award personally.  If you have any questions or concerns, please email Sara Weir (sweir@ndss.org).  We look forward to receiving your nominations.

My Great Story Buddy Walk Section!

from the NDSS:

The Buddy Walk® is a great time for bringing families, friends and communities together to raise awareness for the acceptance and inclusion of people with Down syndrome. The My Great Story campaign's Buddy Walk section is the perfect way to share your Buddy Walk experience with other walkers and those who couldn't make it in person.

The Buddy Walk blog posts stories from the My Great Story campaign on Buddy Walk Wednesdays - share your story for a chance to be featured! Click here to check out the Buddy Walk blog.

Click here to visit the My Great Story public awareness campaign and to share your story.

Buddy Walk Organizers:  

Click here to download the My Great Story Buddy Walk flyer to distribute at your Walk and encourage your participants to share their stories!  

Times Square Video Contest Info

from NDSS:

Contest Information Celebrate the 17th anniversary of the Buddy Walk® by entering the Times Square Video Contest. The video, which showcases individuals with Down syndrome from all over the world, will air in the heart of Times Square on September 24, 2011 at 10:15 am ET.  The New York City Buddy Walk will immediately follow the video at the Great Hill in Central Park. Each year, NDSS receives thousands of photo submissions for the Times Square Video Contest. The winning photographs represent the diversity of the Down syndrome community.  ONE photo per individual can be submitted to the contest. If you send more than one photo, NDSS will only use the first submission.  All individuals in the photo sent to NDSS must sign off on a consent form to be considered for the video. If more than one person is in the photo, please indicate which individual has Down syndrome.  Click here to submit a photo and consent form online for the 2011 Times Square Video Contest. If you prefer to send a photo and consent form by mail, please use following address: NDSS Attn: Call For Photos 666 Broadway, 8th Floor New York, NY 10012 To download a copy of the consent form, please click here. The deadline for submitting a photo is July 15, 2011 at 11:59pm ET. Final photo selection will take place on July 27, 2011 by an independent third party and winners will be contacted by a representative from NDSS via email or telephone starting the week of August 1, 2011. NDSS will notify you ONLY if we accept your photograph for the video, and we are unable to return any photos. Affiliates and others interested in spreading the word can click here to download the 2011 Times Square Video flyer, which has all of the information necessary to encourage members and friends to participate! Be inspired! Click here to view the 2010 Times Square Video.

from the NDSS:

NDSS is pleased to spotlight their newest National Buddy Walk Partner, Down Syndrome Footprint. Established in 2009 by new parents Mike and Katia Hauser, Down Syndrome Footprint started from a vision seeking a unique and universal image that would both represent Down syndrome, and develop awareness, empowerment and employment for individuals with Down syndrome. Down Syndrome Footprint is proud of the fact that each of its products is either made or packaged by an individual with Down syndrome.

  

To help support each approved Buddy Walk, Down Syndrome Footprint is offering each Walk a basket of Down Syndrome Footprint merchandise. In addition, Down Syndrome Footprint has come up with three different ways that you can raise funds for your Buddy Walk or your organization using their merchandise risk-free.

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

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

iPad for kids with Down syndrome

From wfmj.com:

Marina Donadio isn't even in kindergarten yet, but the five-year-old is already learning to spell and read. Her mom, Kelly Donadio, says it's all because of apps on an iPad. "It's mind blowing to me that she's able to do that."

And since children with Down Syndrome often face challenges with fine motor skills, the iPad's touch screen makes activities more accessible.

Donadio says, "Holding a pencil is a chore sometimes for children with Down Syndrome because of the low tone in their hands. Eventually they do that, but this is a great way to help it not be such a challenge."

Now, other children like Marina will have the same opportunities to improve their education and communication skills. Recently, the Down Syndrome Association of the Valley gave away 21 iPads to member families.

DSAV Board Member, Chris Donadio says, "The iPad is a pretty big deal. It's being used in a lot of special education settings around the country, and right here in the Valley, we're on the cutting edge."

Parents say they expect the teaching tool will be useful both at home and at school.

The iPads were purchased with grant money from Ronald McDonald charities, as well as money raised from DSAV's annual Buddy Walk.

Buddy Walk on Washington

The Buddy Walk on Washington will happen a week from now. This Buddy Walk focuses on making contact with Congressmen to promote keys issues to improve the lives of people with Down syndrome. People from all over the country will be attending to meet with their state's Senators and Representatives.

In addition to advocating with our country's leaders there will be time with meet with affiliates from all over the US and national groups like DADS.

If you can make it to Washington, DC February 7th and 8th please join us to promote, share, and learn, and if you can't make it then please send a note of support to attendees from your state. Lastly, make sure you get Susan Goodman's updates to contact your Congressmen when your voice is needed to help advance policy initiatives.

• Buddy Walk on Washington