Dancing for Down's draws 300 to Surf Ballroom

by Kristin Buehner from Globe Gazette.com:
People with a heart for their friends and family members with Down syndrome put on their dancing shoes Saturday and headed for the Surf Ballroom to help raise money for a good cause.
The third annual Dancing For Down’s brought in an estimated 300 people from the Waterloo-Cedar Falls and Mason City-Clear Lake areas.

“It’s a great way to raise funds for the work our group does and to raise awareness of the cause,” said Jake Byers of Waterloo, president of the local board of Designer Genes Down Syndrome.
Byers, who stood holding his 5-year-old daughter Hannah, said, “We want to raise awareness that people with Down syndrome are a blessing in our lives.”
In addition to a rock ’n’ roll dance with a disc jockey, a large silent auction and raffle were planned to help raise money for the group’s work, which includes helping new parents of children with Down syndrome and working with schools to advance the cause of inclusion in the classroom.
The Designer Genes group also sponsors activities such as Fun Days, Movie Days and Swimming Days for people with Down syndrome and gives scholarships for people to attend special camps and educational conferences, Byers said.
Dixie and Keith Stiles of Mason City were among the crowd attending the event with their granddaughter, Emma Stiles, who has Down syndrome.
Like many of the children attending, Emma had dressed up in a red dress and shoes for the big night, her grandparents said.
“It’s just so awesome that they do something like this,” Dixie Stiles said. “It’s good for the kids. It’s like a party for them.”
Keith Stiles agreed.
“I think more than the kids have fun,” he said with a grin. “It’s a nice venue, too.”

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.

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

CELEBRATE WORLD DOWN SYNDROME DAY!

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
6. PRINT THE FLYER AND TAKE IT WITH YOU ON MARCH 21.
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!

MDSC Breakfast Fundraiser!

from Northbridge Dialy Voice by Deborah Gauthier:
One doesn't have to go to Disney to have breakfast with Minnie Mouse; she’ll be in one of the gift  baskets raffled Saturday at a breakfast to benefit the Massachusetts Down Syndrome Congress and the Criterion Early Learning Center of Whitinsville.
The breakfast will be from 8-11 a.m. at the Knights of Columbus Hall, 77 Prescott St., Whitinsville. The cost is a donation to a cause close to the hearts of Russ and Kelly Trottier of Sutton.
Their son, Colin William, was born two years ago with Down syndrome, and since his birth the couple has learned just how crucial the two benefiting organizations are to families like theirs.
Last year, Trottier raised money for the Down Syndrome Congress by running in the Boston Marathon. Unable to do that this year, he and his wife decided to sponsor a breakfast that they hope to make an annual event.
In addition to the Minnie Mouse gift basket donated by the Shanahan family, items available in raffles include a Tom Brady autographed Red Game jersey from Reebok, a David Ortiz autographed baseball  from Reebok and a  Dion Branch 8x10 autographed photo from Pro Sports Chick.
Those not interested in sports may be more interested in a tea and local honey gift basket donated by Ken Warchol, a “Thirty-One’’ gift basket donated by Ashley Tevapaugh, a custom portrait session for up to four, including an 8 X 10 print valued at $195 donated by Erica Ewing, or a 12-month gym membership from Blackstone Valley Physical Therapy.
The organizations that will benefit from the breakfast play a vital role in Colin’s development, Trottier said. “There are a number of other families in the area who need our help and would greatly appreciate support,” he said.
The Down Syndrome Congress and the Early Learning Center support and enable children and adults to be a part of the everyday life of their communities, Trottier said.
“Any donation, however modest, will go a long way in helping our family and friends with developmental disabilities to be active members of the Blackstone Valley community,” Trottier said.
For more information, contact Trottier at russell.trottier@gmail.com or 617-780-1927.

GiGi's Playhouse event to help give a voice for Down Syndrome

KTIV News 4 Sioux City IA: News, Weather and Sports

by Kristie VerMulm from KITV 4:
A group that provides teaching and support to those with Down Syndrome is raising money to help serve more Siouxlanders.
GiGi's Playhouse was started in Chicago ten years ago by Nancy Gianni, when her daughter was born with Down Syndrome.
Now, there are more than a dozen other centers including one in Sioux City. It opened in 2009 and the numbers have grown steadily since.

GiGi's Playhouse is hosting its "I Have a Voice" gala on Saturday, February 23, at the Marina Inn in South Sioux City, Nebraska. Besides dinner, the event includes both a live and silent auction.
Tickets are still available. They're $75 a piece or a table of eight for $600. They can be purchased by clicking here or by calling (712) 226-PLAY.
If you want more information about GiGi's Playhouse click here.

More than 3,500 take the 'Plunge' for Special Olympics Delaware

from Delaware Online:

Special Olympics Delaware said that 3,500 people participated in the 2013 Polar Bear Plunge benefiting their organization today.

The event raised $652,000, spokesman Jon Buzby said. He said that in 22 years, more than $6.8 million has been raised.

Air temperature at the time of the plunge was 30 degrees, while water temperature was 38 degrees.

Buzby said 51 dogs participated in the Pooch Plunge held Saturday.

Donate clothing to benefit NDSS

December 5, 2012 - December 22, 2012 With the holidays just around the corner, it's time to get into the spirit of giving. For the next three weeks, we've made supporting the National Down Syndrome Society easier than ever by partnering with Fashion Project!

How It Works

Donate your nicer clothing, shoes
& accessories to fashion project

Signup online by December 22nd, and Fashion Project will send you an exclusive, prepaid donor bag.

The Fashion Project team will then resell your items in their online boutique, routing 60% of the proceeds back to the National Down Syndrome Society.

Global Down Syndrome benefit is expanding

by Joanne Davidson from The Denver Post:
Let's take a good thing and make it even better seems to be the catchphrase for the 2012 Be Beautiful Be Yourself Fashion Show. The Oct. 13 benefit for the Global Down Syndrome Foundation has a new location, several great additions to the committee and a new element best described as "timely."

At a cocktail reception held at the Lawrence Covell boutique in Cherry Creek North last week, chairwoman Nancy Sevo announced that special guests will include music icon Quincy Jones; Academy Award-winning actor Jamie Foxx and his sister, foundation ambassador DeOndra Dixon; and actor Luke Zimmerman, whose credits include "Secret Life of the American Teenager."

The goal, she added, is to raise $1.75 million. "I know that's aggressive," Sevo said, but thanks in large part to the efforts of corporate sponsor chair Shane Phillips, $900,000 is already in hand.

Sevo also reminded the 200 guests that the event is moving to the Sheraton Denver Downtown and that a new silent auction category has been added. "It's Time" will be a collection of vintage, designer and other new or lovingly cared-for watches and clocks. Have a donation? Call Martha Cronen, 303-468-6667.

The event is also welcoming support from Annabel Bowlen, wife of Denver Broncos owner Pat Bowlen, and several of the women who had volunteered with her on behalf of Beacon Youth and Family Center's Cherish the Children Guild. Beacon Center, which had provided mental health services for 42 years, closed in March 2011.

Bowlen is chairing Be Beautiful Be Yourself's live auction. Other former Beacon supporters with leadership roles include Kay Burke (silent auction); Debra McKenney (tickets); Judi Wolf (program and talent); Nicole Gampp (gift bags) and Judianne Atencio (public relations). Former guild members Marilyn Spinner, Lydell Peterson and Edna Chang-Grant also are on the committee and Quinn Washington is coordinating participation by young professionals.

Guests at the kickoff also enjoyed hors d'oeuvres from Catering by Design, informal modeling and a runway segment that had children with Down syndrome appearing in clothes from Little Me's and professional models showing fall styles by designers carried by Lawrence Covell: Brunello Cucinelli, Jean Paul Knott, Chris Benz and Caruso.

Sevo said that in keeping with tradition, there will be a fashion show at Be Beautiful Be Yourself. The stars will be children with Down syndrome escorted by professional athletes and the visiting celebrities. What's different is that unlike in the three previous years, there is no fashion sponsor for the adult models. They will be wearing their own clothes.

Also attending the kickoff were Cookie Gold with daughter and son-in-law Ricki and David Rest; Susan Karsh; Cindy Farber; Sunny Brownstein; Maureen Cannon; Josh Hanfling; Michael and Shereen Pollak; Arlene Hirschfeld; Ellen Wiss; Rosie Painter; Lyn Schaffer; David and Kasia MacLeod; Betsy Martin and fiance Kevin Marr; and Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation.

Tickets, starting at $500, can be purchased by calling Diana Moore, 303-468-6663.

Read more: Davidson: Global Down Syndrome benefit is expanding - The Denver Post http://www.denverpost.com/lifestyles/ci_21429919/global-down-syndrome-benefit-is-expanding#ixzz259AxAx63

Healdsburg’s Project Zin Serves Up Support of Down’s Syndrome

from the Daily Blender by Kat Vetrano:
After a while, food and drink events can start to feel like they all run together. While I have nowhere near as much event experience as Jennifer, I’ve been in it long enough to know that sometimes these events can feel a little…repetitive. But when I heard about Project Zin in Healdsburg – near where I grew up – I knew I wanted to attend. Not necessarily because of the location of the event, but because of the profound purpose behind Project Zin.
Driven by the diagnosis of Down’s syndrome in his son, Brady, winemaker  (and University of Oregon graduate) Clay Mauritson of Mauritson Wines, with the help of renowned chef Charlie Palmer, developed the first Project Zin event last year to benefit the Down Syndrome Association North Bay to not only increase support but also in recognition of DSANB – critical to Brady’s development early on – as well as countless other families in the same position. The well-coordinated evening – certainly not the only culinary event to benefit an important cause – was held at the beautiful Hotel Healdsburg and provided information on the struggles of the diagnosis of Down’s, highlighting a number of local children involved with the association.
“It’s great to see how far the event has come,” said Thomas Schmidt, executive chef at John Ash & Co, who cooked for the second year in a row. “Clay wanted to have twenty-one wineries to honor the 21^st chromosome that most people with Down syndrome have a duplicate of, and this year he got to achieve that.”
The dishes served were hearty plates of familiar comfort food often highlighting local Painted Hills Beef, all with a Sonoma County touch. A “beef” LT was slathered with a violet-colored zinfandel aioli, while a creamy oyster topped with a zin and bubbles was the ultimate oyster shooter. The wine poured was remarkable, highlighting the jam and spice that make zinfandels from the area so special. While I missed the silent auction part of the evening, I did see the gigantic list of options to bid on from wine packages to get-away weekends, so I know even more proceeds were raised outside of those already earned from the event tickets.
Events like Project Zin remind me why food is attractive to write about in the first place—almost everyone can relate on some level, and when done right, it just makes you feel good. When I think about a friend’s brother who has Down’s, I remember it being impossible not to smile around him, either—his excitement about art, music and life were infectious.  An event like this, with an important cause and stellar food and wine, certainly gave me plenty to smile about, too.

breakfast & run fundraiser showcases its participants

WMDT 47 News - Delmarva's Choice

by Natalie Costello from WMDT 47 News:
Sunday, two Delaware organizations, the Boardwalk Buddy Walk and Best Buddies Delaware teamed up to host the first annual Dewey Beach 5K Run and Pancake Breakfast.

People came from near and far to show their support for The Best Buddies Delaware. The event was held to raise funds and educate others about the importance of providing enriching programs for people with developmental and intellectual disabilities.

"I truly believe in the organization of Best Buddies, it's brought so many kids at the High School together. It's friendships that last a lifetime," says Pam Johnson. Johnson is the advisor for Dover High School's Best Buddy Program.

Dennis Diehl, founder of Boardwalk Buddy Walk, works closely with students at Chimes, a Delaware organization that provides vocational and other types opportunities for people with disabilities.

Dennis is proud of all his students, especially Eddie Drake who is studying culinary arts.

"It makes my day, I come and watch these guys come in and out of the kitchen, it gives them such an appreciation that they are doing something meaningful... and watching Eddie smile. He makes me laugh all the time. It's a great day when Eddie shows up to work," says Dennis.

And Dennis was right, you can't help but smile when you are around Eddie. When asked what his favorite part was about cooking, he quickly replied, "Um...Spaghetti!"

And for high school senior Andrew Granda, a Best Buddies participant and avid cross country runner, it was today's 5K event that brings a smile to his face. ""I've been in a lot of 5K's, in fact, I've done cross county for three years and I am going to do it for my last year."

Sunday's fundraiser was more than just a 5K and pancake breakfast, it was a chance for Best Buddies Delaware to showcase some of the amazing talents and personalities of their participants.

Actors Scott Grimes and Bob Guiney to Perform at GDSF's Fashion Show, Featuring Models with Down Syndrome

     

SOURCE: Global Down Syndrome Foundation (GDSF)


WHAT
Models with Down syndrome--escorted by members of Congress--will star in the Global Down Syndrome Foundation's (GDSF) Be Beautiful Be Yourself Fashion Preview, a fundraiser designed to raise awareness about the chromosomal disorder affecting one in 691 babies. This high-style evening also features a musical performance by Hollywood actors Scott Grimes and Bob Guiney and fashions from Robcyns Children's Clothes and Accessories.


WHEN
July 19, 2012, 6:30-8:30pm


WHERE
Sewall-Belmont House 144 Constitution Avenue, NE, DC


WHO
-- Models with Down syndrome, including GDSF Ambassador (and Jamie Foxx's sister) DeOndra Dixon, accompanied by four members of Congress and actors Bob Guiney (The Bachelor) and Scott Grimes (ER)
-- Celebrity musical act: Scott Grimes and Bob Guiney, who perform with Band from TV, a group of television actors who donate their performance proceeds to charities
-- Dr. Huntington Potter, newly appointed Director of Alzheimer Disease Research, Department of Neurology and the Linda Crnic Institute for Down Syndrome, University of Colorado School of Medicine
-- Members of Congress including the Honorable: John Barrow, Ann Marie Buerkle, Michael Burgess, John Carney, Bill Cassidy, Geoff Davis, Diana DeGette, Cory Gardner, Cathy McMorris Rodgers, Ed Perlmutter, Jared Polis, Scott Rigell, Pete Sessions, Scott Tipton, and Chris Van Hollen


WHY
Down syndrome is the most frequent chromosomal disorder affecting an estimated 400,000 Americans, but is the least funded genetic condition by the National Institutes of Health (NIH), securing a mere 0.0007 percent of NIH's 2011 $31 billion budget. GDSF is focused on raising funds and educating the public and leaders about the discrepancy in research funding for the disorder as well as the abilities and achievements of those with the condition.


HOW
Tickets start at $150 for people who have a family member with Down syndrome and $250 for general public admission and can be purchased at http://www.globaldownsyndrome.org/ or by calling 703-683-7500.


CONTACT
To cover the event, please contact Shawn Flaherty at 703-544-3609.

Cable TV pioneer Dr. John C. Malone makes impactful donation to the Global Down Syndrome Foundation

from the Global Down Syndrome Foundation:

Cable TV pioneer and Chairman of Liberty Media Corporation, Dr. John C. Malone, announced a $100,000 gift to the Global Down Syndrome Foundation to benefit the organization’s marquee annual benefit, the Be Beautiful Be Yourself Fashion Show.

The fundraiser will be held at the Sheraton Downtown Denver on Saturday, October 13, 2012 with celebrity and self-advocates such as dancer DeOndra Dixon, actor Luke Zimmerman, Music Icon Quincy Jones and Academy and Grammy Award-winner Jamie Foxx.

The Global Down Syndrome Foundation’s annual marquee event is equal part awareness-building and fundraising for the Linda Crnic Institute for Down Syndrome. The Be Beautiful Be Yourself Fashion Show is the largest single fundraiser for Down syndrome in the United States. At the heart of the event is the reality that Down syndrome is the least-funded genetic condition by the National Institutes of Health. 

After welcoming a granddaughter with Down syndrome into his family, John J. Sie, another cable TV pioneer who worked for Dr. Malone for more than 20 years, helped to launch the Crnic Institute and the Global Down Syndrome Foundation.

Dr. Malone commended his longtime friend and colleague, John J. Sie, for his approach to stimulating research and medical care benefitting people with Down syndrome. “I’ve known Johnny for a long time now. When he sets his mind to something he will get it done,” said Dr. Malone. “That’s good news for people with Down syndrome and their families – the research Johnny is underwriting is exciting and promising. I’m glad I can help.”

“This gift means a great deal to me, my family and of course the millions of people with Down syndrome who deserve more research funding and better medical care,” said John J. Sie, board member of the Crnic Institute. “We so appreciate John and Leslie’s generosity and friendship.”

Dr. Malone is Chairman of Liberty Media Corporation, a position he has held since 1990. He is also the Chairman of the Board of Liberty Global, Inc. (LGI), a position he has held since June, 2005. From 1996 to March 1999 when Tele-Communications, Inc., (TCI) merged with AT&T Corp., Dr. Malone was also Chairman and Chief Executive Officer of TCI. Previously, from 1973 to 1996, Dr. Malone served as President and CEO of TCI. He currently serves on the Board of Directors for CATO Institute, Expedia, Inc., Discovery Communications, Inc., and SiriusXM. Additionally, Dr. Malone is Chairman Emeritus of the Board for Cable Television Laboratories, Inc. as well as Director or similar capacity for various family businesses, Trusts or Foundations.

John J. Sie is founder and former Chairman of Starz Entertainment Group LLC. Founded in 1991, the Colorado-based company is owned by Liberty Media Corporation and is the parent of premium movie networks, including Starz and Encore.  Sie is considered by many to be the father of digital television – in 1989 he submitted the very first white paper on digital compression to Congress and the FCC that would dramatically change the landscape of television in the United States and the world. In 2005, Sie retired and with his wife Anna established the Anna and John J. Sie Foundation. The Foundation supports the sharing of knowledge amongst peoples and cultures throughout the global community, with emphasis on Down syndrome, education, media, business, and technology.

About the Linda Crnic Institute for Down Syndrome

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

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

she holds the pulse of community in her hand

By Susanne Martin - Bowen Island Undercurrent:
This July, as the Ballymack sets sail from Victoria to Maui, a very special person will come to wave goodbye to Allard Ockeloen: his daughter Emily. Ockeloen is one of the six crew members who compete in the Victoria to Maui International Yacht Race (www.vicmaui.org). They will not only brace the weather and share their experiences in a blog, they are also raising funds for the Down Syndrome Research Foundation (DSRF).


Ockeloen has been living on Bowen Island for 18 years. He and his wife Amanda have two daughters: Emily, age nine, and Olivia (Poppy), age seven. Both girls attend the Bowen Island Community School (BICS).


Emily has Down syndrome and Ockeloen said that she “holds the pulse of community in her hand” as she has strong connections to her friends, teachers and assistants. “Emily is thriving at BICS because they are very attentive to her,” Ockeloen said. “The last time we checked, she knew almost 300 sight words. That is is extraordinary. And of all the kids in her grade, she has borrowed the most books from the library this year.”


Emily’s success is mainly due to the one-on-one attention to foster her ability to read, according to Ockeloen who adds that she started receiving this help in preschool and kindergarten.


“She gets those advantages and reached milestones ahead of others,” he said. “That comes from all her terrific teachers and the people in the community who worked with her in speech therapy and physical therapy.”


Watching his daughter thrive in a public school environment has inspired Ockeloen to make a difference and he was pleased when his Ballymack team members suggested making Down syndrome the focus for their fundraising efforts. He chose the DSRF as recipient for the funds because “it does not only do research, it also puts it into practice” and Ockeloen thinks it is important that the work benefits “people on the ground.”


The foundation (www.DSRF.org) was founded in 1995 to support people with Down syndrome through their lifespan with a variety of programs such as Baby Sign Language, speech therapy and literacy and social development.


“The DSRF is located in Burnaby and Emily has been there a couple of times,” Ockeloen said. “It helps people with Down syndrome and their parents and caretakers a great deal.”


Having a daughter with Down syndrome has also influenced Ockeloen’s professional life. “I’m a developer on Bowen Island and my personal goal is to create assisted living housing for seniors and people with special needs like Down syndrome and autism,” Ockeloen said. “Research suggests that combining seniors and young adults with Down syndrome makes for a very symbiotic assisted living concept.” Ockeloen has a good sense what is required to bring a project like this to fruition on Bowen Island and says that this goes hand in hand with the research of the DSRF.


Ockeloen believes that it is a true gift to know someone with Down syndrome. “Emily is pretty happy in general and we spend lot of time near the water and on the water,” Ockeloen says. “Her favourite thing is swimming and the next favourite thing is to be with us on the boat.”


Ockeloen grew up in the Caribbean. He has been sailing all his life and participated in a number of races but he’s never embarked on a trip that covers a distance of approximately 2308 nautical miles. “This is a big race for me,” he said. It had been Ockeloen who suggested entering the Ballymack in the Vic-Maui Yacht Race. “I raced with the owner of the Ballymack on another boat years ago,” he recalls. “We talked about the boat and I suggested it would be perfect for the race to Maui.” The idea inspired the owner of the Ballymack to scout for a compatible crew. “We all sailed together but never in that particular crew,” says Ockeloen. “We practiced a lot to make sure we get along.”


The Ballymack crew will donate 100 per cent of the funds raised to the DSRF - it has received private donations and accepted corporate sponsorships. “The larger sum sponsors get mentioned on the website,” Ockeloen said, adding that they have already exceeded their goal of $15,000 and are going to continue fundraising through the trip. To support team Ballymack’s fundraising, visit http://dsrf.kintera.org/vic-maui.


The cost for the trip is covered by the owners and crew of the Ballymack. “It’s our pleasure,” Ockeloen said. “It took us two years to put that campaign together and the process has been very rewarding.” Ockeloen is looking forward to the start of the race. “Once you step on the boat, there’s nothing else you can prepare,” he said.


But his family will never be far from his thoughts. To follow the Ballymack’s progress across the Pacific, please see the blog at http://ballymack.blogspot.ca.

Thieves steal charity golf tournament items

from ABC 30 by Linda Mumma:
Organizers of a golf tournament in Dinuba are teed off after thieves stole thousands of dollars' worth of raffle and silent auction items the night before the event. The fundraiser was part of a benefit to raise money for the Down Syndrome Association of Central California.
On Friday, golfers at Ridge Creek Golf Course didn't let the suspects who stole $4500 worth of goods spoil their fun. All 70 athletes showed up to play in the tournament, but many left empty-handed. That has organizers concerned about next year's attendance.
"The way you make your mark is if you have a good tournament the first year then more people will want to come the next year and so with our hiccup I think it might hurt us a little bit," said Down Syndrome Association President Manuel Cortes.
When Cortes awakened at 5:30 Friday morning to load items into his SUV, he found his stereo had been stolen as well as the golf equipment he had placed in there the night before.
"This is basically everything they took," he said as he pulled a bag out from the back seat. "We have golf towels that say "Tee Up for Down Syndrome." These are all the gifts we were giving them and our logo on water bottles."
Seven boxes of merchandise were missing, including $900 worth of golf balls and about 150 tournament t-shirts with the Association's logo embroidered onto the top left side.
"It's senseless to take stuff when you see something labeled Down Syndrome Association," said Cortes. "You can't sell that without people knowing where you got that from."
The car was parked out in front of his Visalia home. He said it appeared the thieves had taken their time.
"I'm assuming they got in through the back," said Cortes. "You can see the tire tracks. You can see they just backed up right into it and just shuffled back and forth loading up their vehicle."
Also missing were several raffle and silent auction items that were supposed to help the organization raise money for children with down syndrome. Golfers told Action News they couldn't believe someone would steal from kids with special needs.
"It's terrible," said George Rodriguez. "There's a lot of people that wake up in the morning that look forward to going to the tournament, knowing it was going for a good cause."
Despite the theft, organizers say the athletes had a good time and they hope to have an even bigger turnout at next year's tournament.
"Anger first hits you first, of course, then the shoulda, woulda coulda's, then 15 minutes later you're like you know what it's just stuff. They didn't come into the house," said Cortes.
Organizers are already planning their next big fundraiser in October at hoover high school in Fresno.

Shane and Wyatt Down Syndrome Foundation

from the Waksmunski family:

The Shane and Wyatt Down Syndrome Foundation (SWDSF) is now open for business.  This Foundation will have two primary points of focus.  The first will be to recognize those in our schools and communities that are making a difference in the everyday lives of those with Down syndrome or special needs.  The second will be to assist individuals or families, who may not always ask, but who could use  a helping hand.

First, I spend a lot of time advocating for my sons and educating those who may not know of the challenges, struggles, joys and success of having a child (or twins) with Down syndrome or special needs.  With this in mind, SWDSF will establish a scholarship program for high school seniors to be used to continue their education after High School.  This award will go to a senior who has shown leadership while advocating, fundraising or volunteering to help and assist those with special needs.  I hope to establish at least two scholarships in two different High Schools for the class of 2013.  SWDSF will also establish a community award that will go to an individual with Down syndrome or to a sibling of an individual with Down syndrome who has made a significant contribution to the Down syndrome community.  For this award, since I will come out to meet the person and conduct the presentation, we will initially limit this to those living in the Northeastern United States.  I hope one day to be traveling the country delivering this award.  My hope is that nominations would come from the nominee’s friends, family or local Down syndrome group.  This is an opportunity to work together and say thanks to those who are making a difference.

Secondly, SWDSF will establish a program to assist individuals and families in purchasing learning tools, iPads or supplies that will positively impact a person’s life so that this person may reach their full potential as a person.  SWDSF has already secured donations to purchase an iPad that will be delivered next month to a family in PA.  This family also has twin boys with Ds, are non-verbal and have autism.  After notifying their Mom this past weekend and after a few back and forth emails, this was the last email from her that I received:  “Thank you!!!!!!!!!!! And I KNOW this will help the boys unlock what's inside their smart little heads”  I hope so!!  This is why this program is so important.  Hopefully, we will be able to assist many more families as well.

This Foundation will only work and be successful if we all get involved.  SWDSF will need financial assistance and with your help and through your donations along with fundraising activities, we can make this possible.  I realize that there are many family obligations, financial stresses, other charities and such, but I know we can make a difference and we will, one family at a time.  Also, my goal was not to rival other local Down syndrome groups or organizations to but work with them to recognize those who are making a significant contribution and to develop a program to assist families.

We are planning a Fundraising Dinner / Dance for later this year, more information to follow on this event.  If you are interested in sponsoring an event or hosting a fundraiser, please reach out to me so that we can discuss this in more detail.

I hope you find what we are doing valuable and beneficial.  Please consider making a donation so that we can really hit the ground running.  Every donation is important, with no amount being to small.

I am so excited and I know together we can make a difference.  The first iPad is being delivered next month and the first community award will be presented shortly as well.  This is just the beginning!!

Please send donations to:

Shane and Wyatt Down Syndrome Foundation

PO Box 214

Lehighton, PA  18235

My email address is ericwaxy@ptd.net  

Again, THANK YOU!!

Shane and Wyatt Down Syndrome Foundation 

The Parade That Cares and Shares

from LI Herald:
The Rockville Centre St. Patrick’s Parade is set to take place on March 24.

This year the parade has chosen three charities to be the beneficiaries of the St. Patrick Day Parade Committee’s almost year-long fundraising endeavors. The three charities are: The Association for Children with Down Syndrome (“ACDS”), The Ronald McDonald House of Long Island and the Educated Canines Assisting with Disabilities.

Located in Plainview, the Association for Children with Down Syndrome was established more than 40 years ago and serves approximately 700 individuals with Down Syndrome and other developmental disabilities.

The Ronald McDonald House of Long Island, which opened in 1986 in New Hyde Park as the 100th of the more than 300 Ronald McDonald House programs around the world, has a mission to give shelter and comfort to the approximately 1,000 families with a seriously ill child in a local hospital it serves per year.

Educated Canines Assisting with Disabilities, Inc. (“ECAD”) is a national non-profit organization incorporated in New York that primarily serves the East Coast through its mission of enabling people with disabilities to gain greater independence and mobility through the use of specially trained dogs.

For 16 years, Rockville Centre has hosted ‘The Parade That Cares and Shares.” During that time, 45 charities have benefited and $676,000 has been awarded from the money raised through a variety of fundraisers from September through March. Coming on Jan. 27 at 7 p.m. is the annual Taste of Rockville Centre that is held in the St. Agnes Parish Center Local restaurants participate in this event every year and bring a sampling of their wonderful food as well as wine tastings from a number of different vintners.

On March 11, CJ’s Coffee House will once again host a spectacular breakfast fundraiser from 7 a.m. to 1 p.m., and on March 23, the 16th annual Grand Marshal’s Dinner will take place at the Rockville Centre Links honoring this year’s Grand Marshal Kathleen Alcock, the owner and operator of Kathleen’s of Donegal on North Park Avenue.

To learn more about ‘The Parade That Cares and Shares” you can visit http://rvcstpatrick.com/. Purchase its Shamrock Steps for $2 each, to mark the number of steps down the parade route or participate in its 50/50 raffle which is drawn on the night of the Grand Marshal’s Dinner.

the heart pillow project

from Standard Examiner by Rachel J. Trotter:

Love was in the air as students from Weber State University and Ogden High School worked with members of the Morgan/Weber Down Syndrome Foundation to tie heart pillows for the cardiac unit at McKay-Dee Hospital.

The heart pillow project is in its third year. In the past, Scouts have worked with the foundation to create the pillows, but this year WSU student Kaitlyn East worked with students in her small group communication class as well as students in Youthlink, a youth service group. They tied and assembled approximately 140 small heart pillows for patients recovering from heart surgery.

The project not only helps those recovering patients but gives those with special needs the chance to do a little service as well.

“It’s been awesome because so often they have the focus on them and now they get to focus on someone else,” East said of the Down syndrome members.

East was excited about the project when she heard about it because she felt like it helped her community. She said that many Down syndrome individuals can suffer from heart ailments so the pillow project can hit close to home for them.

East and some of her classmates spent about a week cutting the fabric for the pillows so it would be easy to assemble last Friday night.

East’s classmates were glad to pitch in on the project.

“It’s pretty cool and it’s always good to help out other people,” WSU student Frank Otis said as he tied together a fleece heart pillow. He smiled as he watched some of the Down syndrome kids play with some of the pillows that had been tied.

“He’s having a great time,” he said, looking at one of the kids.

Susan McQuivey brings her daughter, who has Down syndrome, to the event each year.

McQuivey’s husband had cancer and often used pillows during his hospital stay for a comfort.

“We don’t like to miss things like this,” she said as she worked with her daughter to tie the pillows.

She also enjoys the time to be around other parents of children with Down syndrome.

“We can all relate and our kids can connect with each other,” she said.

The Weber/Morgan group usually meets once a quarter and she always tries to come. Her daughter is grown and she has noticed it provides support if she shares some of her experiences with the parents of younger children with Down syndrome.

The group had an assembly line going, tying each pillow, then attaching a small card with a picture of one of the members and the saying, “From our hearts to yours.”

Noelle Shaw works for the McKay-Dee Hospital Foundation and helps deliver the pillows to the hospital.

“We love getting things. This is an amazing and fun fundraiser,” she said.

The 2 for 2 thank you video - a must watch

from Kelle Hampton's 2 for 2 Initiative:


Please join us in spreading the word. Every child is important. Every child deserves a promising future.

Help us in our 2 for 2 initiative. $200,000 to support the National Down Syndrome Society in honor of Nella's two sweet years of life. Please share our video and our message--help us raise awareness for a more tolerant society that embraces and celebrates differences.


Visit Nella's 2 for 2 Fund to donate.

Kelle Hampton's 2 for 2 campaign

from Kelle Hampton's 2 for 2 fundraising page:

Last year, for Nella’s first birthday, we launched Nella’s ONEder Fund with hopes we might be able to raise $15,000. In a matter of three weeks, we raised over $100,000. We will never forget those weeks—how we cried watching our online fundraising page change within minutes and recognizing just how much people care. We were inspired by others’ generosity—most of which came from people we’ve never met, and our family is eternally grateful for how people are willing to join the cause on behalf of Nella and the more than 400,000 other individuals with Down syndrome living in the United States.

We’re not done yet. We’ve been blessed with another fulfilling year, a year in which we’ve continually been thankful for our daughter’s health and milestones. She’s a funny, inquisitive, smart little girl on the brink of two, and we want to celebrate once again by raising money to show the world our kids deserve everything any kid deserves—opportunity, a bright future.

Our goal this year is to raise the roof on our current funds—2 for 2. We hope to raise $200,000 by the time Nella turns two—that is $75,000 more to add to the already generous support from over 5,500 people since October 2010 (our first fundraiser for NDSS). That doesn’t give us a whole lot of time, but we’ve been inspired and astounded by the kindness of others before. We know it can happen again. Please join us in supporting the NDSS, and make a donation to Nella’s 2for2 Fund and, by doing so, help enrich the lives of others. $5, $10—it adds up. We’ve got proof, thanks to you.

Our family sincerely thanks you. Your generosity has inspired us, and we promise to continue our efforts and give back.

Kindly,
The Hampton Family

traveled halfway around the world to find their son

from The Northwestern by Patricia Wolff:

New father Jake Gibson can barely take his eyes off his beautiful blued-eyed boy, the one he and wife Ashley traveled halfway around the world to find.

The Gibsons, both 27, used the services of Reece’s Rainbow Down Syndrome Ministry, an adoption agency, to find Carter, 3, and bring him back from Ukraine a little more than one month ago.

The last month has been one of pure joy for the couple who sought out a special needs child to be their first. Carter has Down syndrome. It’s that extra chromosome that the Gibsons love so well, Ashley said.

Some people who have babies with Down syndrome grieve the loss of their dream from the perfect child. Not the Gibsons. They volunteered for the job.

These two are joyful; there could be no disguising the level of joy they obviously possess. Jake said he can hardly wait to get home from his sales job at supper time and is ecstatic to arrive home from church youth leadership events to find Carter waiting for him. After than it’s snuggle time on the couch, he said.

“Coming home at night and having a little boy run into my arms is so wonderful,” Jake said. “Fatherhood is different than what I expected, but it’s a better different.”

Where some people see challenge, they see potential. Where some see extra work, they see service to another and obedience to God.

“We’re not special people. We are not these big saviors,” Ashley said. “God just said ‘do this,’ and we said ‘yes.’ It’s as simple as that.”

The couple met at Valley Christian High School and began dating as seniors. They married five years ago. There is no medical reason standing in the way of biological children. They anticipate perhaps having two children that way and adopting at least one more special needs child.

But for now they are concentrating on establishing bonds with Carter, who at 3 and a half is normal on the Down syndrome growth chart but is similar in size and development to a normal 2-year-old.

He loves bath time, is a good eater and likes to explore his world. He recently discovered how fun it is to flip a plastic container of powered sugar around to see it fall and feel its heft as it hits the sides of the container.

At first frightened of Moses, the family’s Springer spaniel, Carter has learned to enjoy his company. “They’re best buds,” Jake said.

He has learned to walk in their care. They are teaching him sign language because they realize children with Down syndrome have trouble with muscle control and learning to talk is more challenging for them.

But, that will come in due time. As will potty training, Ashley said.

Because they said yes to God’s urging them to adopt a special needs child the Gibsons believe God has blessed them with a loving, easy-going child. Ashley, who left her teaching job to be a stay-at-home mother, can’t believe how easy caring for Carter has been so far.

“He sleeps 11 hours at night and takes a three-hour nap during the day,” she said.
The Gibsons are Christians and take the teachings of the Bible to heart.

“God tells us to go help widows and orphans. This world would be a better place if more people would help out,” Jake said.

The Gibsons found that out first hand when their church, Winneconne Christian Fellowship, held a benefit for them in the summer. It raised $24,000 to defray the $30,000 it cost to adopt Carter.

Lisa Gander, a member of the small church, is continually amazed at the generosity of the congregation that numbers right around 100. That the Gibsons are such a loving couple and their mission so pure made it all the more understandable that people rallied around them, she said. “The Gospel, the Bible, we believe it and we believe in following through on the commandments of God. Being generous is one of them.”

But, the Gibsons are human. They had their doubts. In fact when Ashley first suggested they adopt a child with Down syndrome through Reece’s Rainbow, Jake was very skeptical.

“I said absolutely not. Look at the price tag. I don’t have the capabilities,” he told her.

Ashley had already fallen for the little boy she saw on the Reece’s Rainbow site. It turned out to be Carter. Unbeknownst to Ashley, Jake had looked at the site and by chance saw Carter, too. “I fell in love with him,” Jake said.

After that, they never looked back. They immediately began the huge task of applying to adopt him. A mountain a paperwork later and with two trips to Ukraine under their belts, the Gibsons brought their boy home.

They are under no illusions about the work that lay ahead. Parenthood is a huge job. Their immediate goal is to bond with Carter and make sure he feels safe, they said.

His birth parents took him home from the hospital following his birth determined to care for him. The mother had suffered complications in childbirth that would make more children impossible.

Several months later they admitted they were not up for the job and handed him over to the orphanage. They continued to visit him regularly until they adopted another, healthy child.

That breaks the Gibsons hearts. They understand the damage that would have been done to Carter’s psyche. He lost his mother and father and was cared for by a staff.

Orphanages in Ukraine are far from deluxe accommodations, the Gibsons said.

“He has not had one mom; he’s had five nannies a day,” Ashley said.

Carter didn’t stand a chance in Ukraine where Down syndrome is considered a curse. Children born with it are almost always left at the hospital and then go to orphanages. If no one adopts them by age 6, they go to mental institutions. “Some don’t last a year,” Ashley said.

In the Central and Eastern European countries including Ukraine, Kazakhstan and Romania, some 1.5 million children have been abandoned by their families.

The Gibsons’ plan for Carter is that he grow up feeling loved and safe. They realize he will face limitations. He may not know the joy of marriage or fatherhood. But he can lead a fulfilling life. He can hold a job. They expect that one day he may be able to live on his own with minor assistance.

“He is going to know he is different,” Ashley said. “Our job is to teach him there is no weakness in being different.”