What can you do?

October is Down Syndrome Awareness Month

For many of us, every day is a chance to promote Down syndrome awareness—advocating for our children to be included in school and community activities, highlighting their talents, giving them opportunities to show just how much they have to share. The calendar, however, provides us with one month during the year when we can really step up those efforts. Here are some suggestions for how you might promote Down syndrome awareness in your community:

• Distribute NADS posters and bookmarks to area schools, libraries, or businesses (you can order them through the NADS office or the website: www.nads.org)
• Provide your obstetrician or your family doctor with updates about how your child is doing and, if they are receptive, with family photos or information about Down syndrome
• Donate books about Down syndrome to your local school or library
• Talk to your child’s class
• Arrange for a NADS speaker to give a presentation at your child’s school or at an organization in your community
• Contact local media about doing a human interest story about your family or about activities involving people with Down syndrome in your area
• Write a letter to your local paper
• Organize a special event during October to highlight the gifts of people with Down syndrome—a performance, or an art exhibit or a screening of a movie or video featuring characters with Down syndrome (you could also show the NADS video, Talents that Inspire)
• Organize a “Down Syndrome Awareness Day” at a local restaurant or community event

Teen raises awareness along with money for charities

Teen girl's cards help charities

BY CHRISTINA ELMORE

celmore@postandcourier.com

Thursday, September 29, 2011

McKenzie Howard, 19, has faced many struggles in her young life, but through it all, her focus has been on giving back to others.

Born with Down syndrome, she also has a rare autoimmune disease that her doctors have yet to identify. But the teenager is comforted by a love of art that she turned into a full-fledged business selling greeting cards to support area charities.

McKenzie's drawing is systematic, first lining out patterns with a black marker on a sheet of paper. She then lines out four colored markers to fill in the spaces, creating imagery almost reminiscent of stained-glass windows, said her father, Bobby Howard.

Bobby Howard

Provided

McKenzie Howard, 19, of Goose Creek, designs greeting cards that she sells to raise money for charity. Kardz By Kenz has sold cards in thirty states.

Howard said McKenzie first began drawing the patterns in May 2008 while hospitalized for the autoimmune disease that is targeting her lungs.

"During that time frame, she'd gotten sick and she was less active. She loves artwork and she loves drawing, so she'd literally do this (drawing) every day. She just started doing that in the hospital one time, but now we have hundreds of them," Howard said.

A family member first introduced the idea of turning McKenzie's artwork into greeting cards.

Kardz by Kenz became a reality once the family began taking the drawings to local print shops that same year.

"In that one day (when the cards were first printed), we sold 20, so we went back and had 50 packs made up, taking the money and making more and more and more," Howard said.

The insides of the cards are left blank, making it easier for buyers to pen their own messages for any occasion.

McKenzie packages her cards, selling a set of five for $5.

So far, McKenzie has sold more than 1,000 packages in 30 states, Howard said.

"It's (selling the cards) basically by word of mouth. She has a Facebook page now and the website, but we just ask people that we know to spread the word," Howard said.

Howard said his daughter keeps half of what she sells as profit. The rest she donates to her favorite charities.

"She's just got such a big heart. Someday, she would like to work with kids. She'll say, 'I just want to tell them they're beautiful on the inside and outside,' " Howard said.

"I do want to help kids. ... I just want to tell them about art and things," McKenzie elaborated.

Some of the charities McKenzie supports include Art for Life, the Down Syndrome Association of the Lowcountry and the National Down Syndrome Society.

McKenzie also hopes to raise $1,000 for Victory Junction, a camp in North Carolina for children with special needs.

Howard said the camp means a lot to McKenzie after the family took a trip there in 2007 shortly before she began making the greeting cards.

"The camp was fun. I liked hanging out with friends," McKenzie said.

In the past few weeks, McKenzie's business has come second to managing her health.

About the series

This is the latest story in our Kid Entrepreneur series. Know a Lowcountry youth who you'd like to recommend for a future profile? Leave a brief message on our Facebook wall,facebook.com/yourlowcountry.

Howard said McKenzie's respiratory disease flares up every two to three years, and a recent bout has caused blood and fluid to build up in her lungs.

McKenzie was hospitalized for nine days and has missed more than three weeks at Stratford High School, where she is completing her senior year.

McKenzie is eager to get back to school, but in the meantime, she remains at home on oxygen and taking antibiotics to ease her symptoms.

"I miss my friends," McKenzie said of her desire to go back to school.

Until then, McKenzie said she's content doing what she's doing, playing with her Wii and, of course, drawing.

The see her designs and purchase cards, visit www.kardzbykenz.com.


Be gentle.

Bridge to Bridge Race to support Special Olympics

The 35th Annual Glide Floss Bridge to Bridge 12K and 7K run/walk benefiting Special Olympics Northern California Start Time 9:00am on Sunday, October 2, 2011 "America's Most Beautiful Run"  Support Special Olympics We are pleased to announce that, once again, proceeds from the Glide Floss Bridge to Bridge will go to Special Olympics Northern California. Special Olympics provides year-round sports training and competition in a variety of Olympic-type sports for people eight years of age and older with intellectual disabilities. These programs give athletes continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in the sharing of gifts, skill, and friendship with their families, other athletes and the community. Special Olympics Northern California is proud to serve more than 13,000 individuals with intellectual disabilities. There are training and competition opportunities year-round. The programs are free to all eligible athletes and are possible thanks to the generous support from individuals and businesses who believe in Special Olympics athletes. VOLUNTEER INFORMATION We will need 350+ Bridge to Bridge volunteers for Sunday, October 2, 2011. If you'd like to help, please call Shannon Watkins (at Special Olympics) at 925-944-0594, ext. 221 or email her atshannonw@sonc.org. You may also download the volunteer sign-up form, waiver and information. Get more information about Special Olympics Northern California at www.sonc.org. If you would like to make a direct donation to Special Olympics, please go here. Meet Candy Agpawa (aka "The Silver Bullet") My name is Candy Agpawa. I was born with a rare combination of Hydrocephalus and a cleft lip and palate. The doctors did not give my family much hope as to my mental or physical development. There were not many events or activities for special needs kids. I did not have friends of my own. I mostly traveled around with my parents to all my brothers’ and sisters’ social and sporting activities. I always felt there was something missing in my life. So with the help of a wonderful team of doctors and surgeons and the excellent programs that Special Olympics has to offer, I have come to realize that I can live a normal, healthy, active life. The coaches and volunteers in Special Olympics gave me the courage to try new things and to trust myself. My mom pushed me to my maximum potential. She made sure that I was self reliant, that I could hold down a full time job, and that I could function to my fullest capacity in this "Normal World." I know now that there is a bright future ahead of me. Special Olympics has given me the opportunity to try new things, go many places and feel good about my accomplishments. Because of Special Olympics people respect me. They admire me for my commitment and determination to succeed. People call me things like "athlete," "hero," and "champion." My favorite sport is swimming. I swim the 100 meter, the 400 meter freestyle and I am the anchor on the relay team. I wear a silver swim cap and swim so fast that my mom calls me "THE SILVER BULLET!" I have met so many new people and made so many fantastic new friends of my own. We have a lot of fun and always cheer for each other when we compete. Special Olympics has become a very important part of my life. All of my family is proud of me. I love to look up at them in the stands and see them cheering for me. I could not be any of these things without the support of people like you. Special Olympics does not charge athletes any fees to participate. I don’t know of any other organization in the country that offers sports programs for free. But we could not do it without the generosity of people like you. But you need to know that you are supporting more than a sports program. Special Olympics is so much more than sports. Sure we learn sports skills, but what we really learn are life skills. Special Olympics is TRAINING FOR LIFE! The skills we athletes learn by participating in Special Olympics will help each one of us become an important and contributing member of our community. So if you think you are just donating to another sports organization, think again. You are supporting an organization that changes lives directly impacting your local community. Thank you!

Flying high

Jump shot!

Be gentle.

Family

We had the opportunity to visit with lots of family yesterday.  Thank you Uncle Kevin and Aunt Susan for letting us visit!  And there was a special guest, Aunt Kathy. She is visiting from South Carolina.  She is extra special to the boys since she is one of their awesome God Mothers.

My guys

Be gentle

For your Sunday viewing pleasure

From our garden, memories of Hawaii.

Be gentle.

Special Olympics World Games coming to California in 2012

From the Special Olympics press release.

Los Angeles To Host 2015 Special Olympics
World Summer Games

Los Angeles, CA – 14 September 2011 – The world’s largest sports and humanitarian event is coming to the world’s capital for media and entertainment. The Special Olympics International Board of Directors announced today that Los Angeles, California will be the host site for the 2015 Special Olympics World Summer Games. 

In less than four years, Los Angeles will welcome more than 7000 Special Olympics athletes from 170 nations to compete in 21 Olympic-type sports.  The Special Olympics World Summer Games will return to the United States after 16 years, having last been held in the United States in 1999 in Raleigh, North Carolina. The most recent World Summer Games were the 2011 Games that recently concluded in July in Athens, Greece. The 2015 Special Olympics World Summer Games are expected to bring more than a half-million people to the greater Los Angeles area and will be held in summer 2015 (specific dates still to be announced).

“On behalf of our entire Special Olympics movement worldwide, I am thrilled to award our 2015 World Games to Los Angeles,” said Dr. Timothy P. Shriver, Chairman and CEO of Special Olympics. “Bringing our World Games to a city as powerful and prominent on the world stage as Los Angeles will allow our Special Olympics athletes to showcase their talents and demonstrate to the world the best in sports.”

At a press event at the Staples Center in downtown Los Angeles today a memorandum of agreement was signed by Shriver andPatrick McClenahan, Chairman of the Los Angeles Bid Committee, who now transitions to become the President &CEO of the 2015 Special Olympics World Games Organizing Committee.

“In a city full of movie stars and all-stars, our Special Olympics athletes will be the stars of this show as they demonstrate their skills, courage and joy.  Los Angeles will provide the world stage necessary to create the awareness that leads to increased acceptance and inclusion of people with intellectual disabilities throughout Southern California, the nation and the world,” saidMcClenahan.

Los Angeles Mayor Antonio Villaraigosa was also in attendance at today’s event and said, “We are thrilled and honored to be selected as the international city to host the 2015 Special Olympics World Summer Games and look forward to showcasing the remarkable skills and inspiring passion of Special Olympics athletes." 

Along with Shriver, McClenahan and Villaraigosa, others who gave remarks at today’s Special Olympics press conference included: Loretta Claiborne, Special Olympics Athlete Spokesperson and member of  Special Olympics International Board of Directors Games Committee; Tim Leiweke, President and CEO of AEG; C.L.Max Nikias, President of the University of Southern California; Don Knabe, Los Angeles County Supervisor; and Rafer Johnson, Los Angeles’ own Olympic legend - 1960 Olympic Gold Medalist in the Decathlon - and Founder of Special Olympics Southern California.

The event was co-hosted byDonna DeVarona, Sports Broadcaster and Olympic Swimming Gold Medalist and Co-Chair, Special Olympics International Board of Directors Games Committee and Dustin Plunkett, Special Olympics Southern California athlete, International Global Messenger and member of the Los Angeles 2015 Games Bid Committee.The press event also featured a parade of nearly 20 Olympic legends and 20 Special Olympics athletes. 

Every two years, thousands of Special Olympics athletes worldwide come together to showcase their athletic skills and celebrate the spirit of Special Olympics, which celebrates nearly 50,000 events a year. The first Special Olympics World Games took place in 1968 and since then have evolved into a world-class sporting event, attracting a wide range of sponsors, supporters and media. Alternating between Summer Games and Winter Games, Special Olympics World Games bring public attention to the talents and capabilities of people with intellectual disabilities, helping to change attitudes and break down barriers that can exclude them from the mainstream of the community.

Special Olympics World Summer Games Athens 2011 were held in Greece, and the next Special Olympics World Games will be the 2013 Special Olympics World Winter Games in Korea.  The Special Olympics World Winter Games PyeongChang 2013 will be held from 26 January to 6 February 2013 in PyeongChang, Korea; more information can be found at www.2013SOPOC.org.For more information about Special Olympics World Summer Games Los Angeles 2015 please visit www.specialolympics.organd join the conversation on Twitter with hashtag #LA2015.

The power of the Special Olympics movement would not be possible without generous support from our corporate partners. Global corporate partners include: The Coca-Cola Company, The Procter & Gamble Company, Mattel, Inc. and the Mattel Children’s Foundation, and Hilton Worldwide. Lions Clubs International is also an official global partner of Special Olympics.

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

Be gentle.

Down Syndrome Study Finds Families Are Happy

What do you think?

By SHAUN HEASLEY

September 22, 2011

Having a child with Down syndrome may come as a surprise, but it’s a good experience, families are reporting in a trio of new surveys.

Researchers surveyed more than 3,000 family members and people with the chromosomal disorder across the country for what’s believed to be one of the largest looks at life with Down syndrome. The findings, which will be published in three articles in the October issue of the American Journal of Medical Genetics, offer a rosy picture.

The vast majority of parents said they have a more positive outlook on life because of their child with Down syndrome. And, nearly 90 percent of siblings indicated that they feel like they are better people because of their brother or sister with the developmental disability.

Nearly all of the survey respondents with Down syndrome said they were happy with their lives, themselves and their appearance. Only 4 percent said they felt sad about their life.

“As international discussion is mounting over the new prenatal tests, family members have now had their say about life with Down syndrome,” said Susan Levine from the disability nonprofit Family Resource Associates, who worked on the study alongside researchers at Children’s Hospital Boston and the Dana-Farber Cancer Institute. “And, more importantly, the people with Down syndrome themselves have clearly stated that they consider their lives valuable.”

Researchers did acknowledge that the survey population could be a slightly biased one since all respondents came from families that are members of nonprofit Down syndrome groups. Nonetheless, they say the findings are valuable since they offer the “largest and most comprehensive portrait of life with Down syndrome to date.”

Kid smile, oh how they have grown

One of my favorite family photos.

Be gentle.

Remember Punky?

European Award for 'Punky'

A first for animation as lead character has Down syndrome

Image of Cartoon character Punky (courtesy of Monster Animation)

At Cartoon Forum in Poland this weekend, European Producer of the Year went to Ireland's Gerard O'Rourke of Monster Animation.

Monster Animation, an independentanimation studio established in 1995, focuses on creating and producing original projects as well as working on co-productions. Their latest TV series, Punky, was developed by the IFB and produced with funding from the BAI and RTÉ.

The Epoch Times spoke with Mr O'Rourke about the idea behind Punky—a cartoon where the lead character has Down’s syndrome.

The project was originally created by an Irish writer called Lindsay Jane Sedgwick, said Mr O'Rourke. 
“It was through the film board that we were asked to hook up with Lindsey and see if we could turn her great idea into a format suitable for a children’s programme.”

According to Mr O'Rourke, Ms Sedgwick had decided on a character with Down’s syndrome because some of her friends had firsthand experience in that area, and also because she was bemused that there were no characters with Down’s syndrome in animated programmes. “So she used Punky as a vehicle to tell the life story of someone with Down’s syndrome from their point of view,” explained Mr O'Rourke.

It was from that structure that Mr O'Rourke decided to make the animation for pre-school children, and that all the stories should be told from Punky's perspective. Furthermore, Punky would have to be played by a person with Down’s syndrome to be true to the show. “We worked with Down’s syndrome Ireland in finding a person that would be suitable … in the same way that we would cast with any talent agency.”

Children will, by watching the show, learn that Punky has Down’s syndrome but that she is absolutely the same as everyone else.

Ms Aimee Richardson was selected to play Punky. “She did a fantastic job, she was absolutely amazing and she brought Punky alive and did a hugejob for us.”

“It is a show that tells the story of living with Down’s syndrome through Punky's point of view, it is not a show for children with special needs ... it would go in a slot with all other preschool shows … children will, by watching the show, learn that Punky has Down’s syndrome but that she is absolutely the same as everyone else. The most important message we wanted to get out was that she is a person with Down’s syndrome, not a Down’s-syndrome person.”

With respect to the feedback the show has experienced, Mr O'Rourke said, “we have had great success and feedback from all over the world.” The show will have its international launch next month. “It was on that basis that we got voted producer of the year,” he said.'

Gerard O'Rourke of Monster Animation. (Courtesy of Monster Animation)

Pat Clarke is Chief Executive of Down Syndrome Ireland (DSI), an organisation of people with Down’s syndrome and their parents and guardians which has over 3000 member families with 25 branches nationwide. Mr Clarke said that DSI was involved with the production of Punky as a project from the start. “We advised Monster Animation and Gerard O'Rourke on the programming and layout.” “Ms Aimee Richardson, who plays Punky in the cartoon, was and is part of our DSI's national advisory council,” said Mr Clarke.

Commenting on the impact the project may have on the view the public has of people with Down’s syndrome, Mr Clarke said, “What it did was, it showed that the people and particularly children with Down’s syndrome are children first and that they have the same foibles and idiosyncrasies as every other child growing up; they might need a little more attention, they may take things a little more literally than others, but in the main I think the programme over twenty episodes showed people and children with Down’s syndrome in a positive light.”


“They would have had our full support and I'm delighted that Gerard and RTE received this award … this is a unique project and I'm not aware of it being done anywhere else in the world before … I do know that, internationally, there is a lot of interest in the programme,” said Mr Clarke.


Be gentle.