Golf Tournament, Sept. 15th

It’s that time of year. Well into Golf Season and the summer heat, we are getting ready to put on our annual golf tournament. Come September, the annual Golf Tournament will raise much needed funds for kids and their families affected by Down Syndrome in the Kansas City area.

The tournament is scheduled for Monday, Sept. 15 at Shadow Glen Golf Club.
The four man shot gun scramble will tee off at Noon with registration, browsing the gift salon and BBQ lunch 10:30am.

Players will enjoy: 

• Valet car & bag service upon arrival
• Car detailing while golfing
• Opportunity to win a car from Aristocrat Motors
• Holes contests with great prizes
• Meeting & playing against celebrity golfers
• Food & drinks throughout the day
• Putting contest
• Awards cocktail ceremony with Huddle Time to follow

Want to sponsor the tournament? Click here to view the sponsorship levels, and click here to fill out the sponsorship entry form.

We are so excited for this fun event and looking forward to seeing you there!

Community Member Spotlight: Zach Neff

This year the Down Syndrome Guild of Greater Kansas City is celebrating its 30th Anniversary. In honor of how far the Guild has come, we spoke with one of the first families the organization ever served: Zach Neff and his mother Kathleen. 

It’s almost impossible to imagine what the Guild would look like without Zach coming into our offices, whether to participate in programming or just to volunteer. He’s made a big difference in the Down Syndrome Guild and both he and his mother can attest to the difference the Guild has made in their lives.

“I’m really proud of the adult he has become and grateful for the support from the Down Syndrome Guild and First Downs For Down Syndrome to get him to this point in his life,” Kathleen said. “I don’t know what we would do without either of them.”

Because of the love and support the Guild has shown Zach over the years, he continues to volunteer each week at our offices. He said, “I love working with them because they are a second family to me. They love me there.”

Zach is also a member of the Mission Project 2, a branch of the Mission Project, which “enables capable adults with developmental or cognitive disabilities to live independently and safely in community with minimal support.” The Mission Project 2 also provides lots of different programming to keep Zach and his friends busy, which is just perfect for Zach.

“He comes from a family of introverts, but he is a flaming extrovert. Zach is outgoing and friendly, and he enjoys his friendships very much,” Kathleen said. Activities at the Mission Project 2 include things like a movie club, a travel club where the participants plan trips, fitness classes and many more.

But Zach’s participation in these clubs is only skimming the surface. Not only is he an active member of his community, but he is also a college graduate and employed with Children’s Mercy Hospital.

Two years ago Zach graduated from the University of Central Missouri’s THRIVE program, which helps young adults with developmental or intellectual disabilities learn how to transition from home to living independently. 

For others considering the transition to college, Zach reminds them to not shy away from their dreams.

“[The program at UCM] was really good and fun,” he said. “I would say to [new students entering the program] just be yourself and go out there and do your own thing. Express your feelings and just keep going and work hard.”

Zach’s mom also has some advice for those parents who might be as scared as their children when it comes to change.

“Stating out on this journey, a child’s future can look like a black hole,” Kathleen said. “But the resources and support are there. We always told Zach that he could do anything. We told him he could go to college and he went to college. We told him he could have a job and he got a job. All of this came true with the help from the Down Syndrome Guild and First Downs for Down Syndrome.”

Have Fun, Win Prizes and Change Lives at Charity Bingo Night

Mark your calendars for 7pm on Tuesday, July 22 for a special night of Drag Queen Bingo at Hamburger Mary’s! Proceeds from the night will benefit the Down Syndrome Guild of Kansas City.

As you might have guessed, this isn’t your grandma’s bingo night. Attendees will play 10 bingo games hosted by your favorite Kansas City Drag Queens  – and every winner walks away with a prize. Plus there will be a chance for participants to purchase additional tickets for raffle prizes that will be awarded throughout the night.

It only costs $10 to play, but every penny will make a big impact on the Kansas City Down syndrome community. Be sure to RSVP to info@kcdsg.org or by calling 913-384-4848.

To learn more, please visit http://www.kcdsg.org/CharityBingo.php

Can’t make it? You can still help!

The Down Syndrome Guild welcomes almost 50 new babies each year to the Kansas City metro.  In June alone we welcomed 6 new members into the Guild. DSG provides all prenatally or postnatally diagnosed families with a “New Parent Welcome Basket” filled with new baby essentials and up-to-date information about Down syndrome to support parents. 

Consider hosting a basket drive or diaper/wipe drive over the summer to help fill these baskets with new baby items! 

Items to include:

• Diapers
• Wipes
• Baby lotion/shampoo
• Small toys/rattles/teething rings
• Baby outfits
• Quilts/blankets
• Bibs
• Bath time towels/wash cloths 

As always, all donations are tax deductible.

Off to College: Elli Walker to Attend University of Central Missouri Fall 2014

This time of year is full of change for many of our kids: graduations, commencements and plans for the future. Recent Broadmoor Technical Center graduate, Elli Walker, is no different.

This summer, Elli and her mom will be preparing for one of the biggest steps anyone can take: going off to college. Elli will be attending the University of Central Missouri, located in Warrensburg, starting in the fall. After speaking with Elli and her mom, Sharon, it’s clear that Elli and her whole family are very excited about this new change.

“I am absolutely thrilled for her,” Sharon said. “We couldn’t be more proud of her.”

“I’m really excited about the UCM program,” Elli said. She is also excited about pursuing a career working in child development.

“I would like to get ready for a job at a preschool or working with little children,” Elli said.

Elli has experience working with children at her church and with other community organizations. In addition to her passion for children, she is also a fan of art and coloring. In fact, she recently showed off some of her colored pencil designs during this month’s First Fridays events.

Although going off to college can be intimidating for anyone, Sharon knows Elli is ready.

“I know Elli will become more independent and confident, learn more about herself and other people, and gain skills to become employable. It’s the same with any post-high school experience.”

And when it comes to the post-high school experience, Elli and Sharon encourage others to follow their unique path.

Elli encouraged others that are headed to “go for your dreams and keep trying.”

Sharon added it’s important to “work at it one step at a time” and that getting feedback from teachers can be a big help.

“All children need roots and wings to be independent,” Sharon said. “Sometimes it’s difficult for parents of children with special needs to give them those wings to be independent, but we’ve tried to enable her to have both wings and roots.”

Rachel Mast At Thursday's Sporting Kansas City Game

Thanks to the Victory Project, one lucky Kansas City girl got to view the Sporting Kansas City vs Philadelphia game from the Victory Seat.

The 14-year-old, Rachel Mast, doesn't let Down syndrome get in the way of her living life to the fullest. Read our previous blog about Rachel or watch the video to see her at last Thursday's game!

Sporting Kansas City’s Victory Project to Honor Rachel Mast

Tonight during the Sporting Kansas City vs. Philadelphia game, the Victory Project will be honoring 14-year-old Rachel Mast from Olathe, KS. Among Rachel’s many talents, she loves playing soccer the most. She also happens to have Down syndrome.

The Victory Project is “a generosity movement that unites Sporting Kansas City team members, staff and fans to help children thrive through life’s challenges.” Even though Rachel’s life may have some challenges, she’s a perfect example of the way our kids live life to the fullest.

Rachel at Sporting Kansas City's practice for tonight's game. Photo tweeted by Jonathan Mast (@JonathanDMast)

Rachel is an eighth grader at Indian Trail Middle School and inspires everyone she meets. Besides loving soccer, she is also an actress in the Christian Youth Theater and one of Variety KC’s Champions. It’s hard not to be inspired by Rachel’s ambition and drive!

Thanks to the Victory Project for honoring Rachel tonight. We are so proud of all of her accomplishments and can’t wait to see where her beautiful attitude takes her!

Top 5 Celebrity Down Syndrome Advocates

1. Lauren Potter

Who doesn’t love Lauren Potter? Best known as the actress who plays Becky Jackson on the hit show Glee is one of the few actors with Down syndrome who has broken into Hollywood. Obviously that fact is reason enough to admire Lauren, but she doesn’t let her celebrity status go to waste. She uses her fame to help raise awareness about Down syndrome and end the R-word.

2. Eva Longoria

Eva is the founder of Eva’s Heroes, a nonprofit organization that is dedicated to enriching the lives of those with intellectual special needs. Her advocacy stems from her love of her older sister, Elizabeth, who has Down syndrome. Eva’s Heroes, based in San Antonio, Texas, provides an inclusive environment based on “interact, grow, learn and love.” The organization helps teens and young adults integrate with and flourish in society.

3. John C. McGinley

As one of television’s favorite doctors, the actor who played Dr. Perry Cox on Scrubs has used his celebrity to advocate on behalf of his son with Down syndrome, Max. In 2011, John received the Global Down Syndrome Foundation’s Quincy Jones Exceptional Advocacy Award for his work related to people with Down syndrome and people with developmental disabilities in general. John is also a board member and international spokesperson for the foundation and advocates for the Special Olympics campaign “Spread the World to End the Word.”

4. Patricia Heaton

After discovering Reece’s Rainbow Adoption Ministry, Patricia developed a fierce passion for the organization and advocating for those with Down syndrome. The Everybody Loves Raymond actress started a Twitter campaign in 2011 promising $1 to Reece’s Rainbow for every new follower she received up to $10,000. The goal was reached in less than 48 hours! Patricia continues to use social media to spread awareness about Down syndrome.

5. Jamie Foxx

Actor, musician and comedian, Jamie Foxx, has used his voice to help raise money for the Global Down Syndrome Foundation. The foundation also presented him with the 2012 Quincy Jones Exceptional Advocacy Awrd. Jamie is continuously inspired by his sister DeOndra Dixon, who lives a rich and rewarding life with Down syndrome. Jamie is often seen with DeOndra at red carpet events!