From the Board: Greg Szczepan

Today’s post is an introduction from new DSAGSL board president Greg Szczepan. Greg is a long-time member of the DSAGSL family, but here are a few of his own words on his experience!

“Hi everyone, my name is Greg Szczepan (pronounced ZEPAN), and I am excited to be your new board president for the DSAGSL.  I first became aware of the DSAGSL when my wife Kim gave birth to our son, Jacob, who was born with Down syndrome back in 2000.

The DSAGSL sent over a welcome basket when Jacob was born which provided so much educational material about Down syndrome, and support that made us feel like we were not alone.

We also have two older children, Laura and Nick.  Over the years, we have participated in many events supporting the DSAGSL, like SUDS, trivia night and golf just to name a few, but I thought I needed to do more so I became a board member working on the finance committee back in 2015.

A few of my hobbies include following the St. Louis Cardinals, playing golf and just hanging out with my family.  I hope to meet all of you at an upcoming DSAGSL event, so please SIGN UP TODAY!”

A huge thanks to Greg for sharing his story!

5 Ways to Raise Awareness for World Down Syndrome Day!

World Down Syndrome Day is on March 21, less than a month away. To get you in the spirit of celebrating, here are some fun ideas to educate others about this special day!

  1. Wear fun socks!

The WDSD website suggests wearing brightly colored socks, along with t-shirts and other colored clothing. Crazy colored socks can attract attention and questions, and when they do, be ready to tell people all about WDSD!

  1. Have a Pop-Up Snack Shop day at your job

It’s the food truck without the truck! If you want yummy snacks to get you through the day at work, our snack shop can set up a stand to feed you and your co-workers. You’ll also have the opportunity to chat with the awesome staff, made up of individuals with Down syndrome. You can find more information about the Pop-Up Snack Shop here!

  1. Share cool photos and quotes about Down syndrome

Use the power of social media for a good cause by posting a fun meme or photo on your newsfeed. It can be 21 fun facts about Down syndrome, or a quote about how awesome individuals with Down syndrome are! Check out this Pinterest page for ideas!

  1. Run a 21K

Get some exercise and support the Down syndrome community by participating in a 21K! If you’re not a half-marathon runner, no worries…there will also be a 7K run and and 2.1K walk! The 7th Annual Relay and Run for 21 will be on Sunday, March 25, 2018. Check out the Relay and Run website for more details!

  1. Volunteer

One of the best things you can do to show your support is by volunteering your time. Whether it’s one hour, one day, or one week out of a month, every little bit helps! Look here for more information on volunteer opportunities with the DSAGSL!

 

Valentine’s Day Feature: Dollar Dance for DSA!

In honor of Valentine’s Day, we are featuring a story from an awesome couple! For many couples, their wedding day is one of the most important events of their lives. Family and friends from everywhere gather together to celebrate the occasion, and shower the newlyweds with gifts.

Kimberly and Neil Sanders did things differently and gave a gift to others on their wedding day in November 2017. The couple held a “dollar dance,” where guests donated a dollar to dance with the Bride or Groom. They raised $400, and the money was donated to the Down Syndrome Association!

The dollar dance was an effort to support participants of DSA’s Ready 2 Work program, including Kimberly’s cousin Aaron,who has Down syndrome. Kimberly posted on her Facebook page about the fundraising: 

“FOUR HUNDRED DOLLARS is how much our amazing friends and family donated to the Ready 2 Work program with the Down Syndrome Association of Greater St. Louis at our wedding! Thank you to all who donated to help my best bud and his friends find meaningful jobs in the St. Louis Area. It means so much to us! If anyone would like more information on how to hire these awesome self-advocates please let me know!”

We would like to thank this amazing couple for their contribution to DSA, and wish them a happy first Valentine’s Day as newlyweds!

 

 

 

 

 

Here’s How You Can Support House Bill 1658!

HOUSE BILL 1658- February 6th, 2018

On Tuesday, DSAGSL Executive Directer Erin Suelmann, traveled to Jefferson City with Advocacy Committee member and parent, Pat Alster, to testify in support of House Bill No. 1658, introduced by Rep. Chuck Basye.

If passed, this bill will expand insurance coverage for vital therapies to any child with a physical or developmental disability in Missouri. Health insurance providers would not be able to deny coverage for therapies designated necessary by a health provider. These therapies will include, but are not limited to, therapeutic care, habilitative or rehabilitative care, and applied behavior analysis. You can read the entire bill and track its progress on the Missouri House Website.

Erin stated, “This would be a huge win for the Down syndrome community. All of our children benefit from early intervention and therapies throughout their early years, but many can not access the number of hours that is necessary due to lack of insurance coverage and high costs. The expansion of coverage for speech and behavioral therapies would be a game changer for our community.”

Other issues we are currently tracking involve changes to guardianship, inclusive employment, and of course, the Missouri state budget.

advocacy

The DSAGSL is expanding our legislative advocacy efforts, and would love to have you involved.  To join our monthly Advocacy Committee call, contact Erin@dsagsl.org 

If you are a Self-Advocate that would like to learn more about current legislation and advocacy, there will be an Steps to Independence Advocacy Class on Tuesday, March 6th from 9am-1pm at the DSAGSL office. Lunch is provided! 

You are also welcome to join us in Jefferson City on March 13th for Disability Rights Legislative Day!

Please e-mail Andi@dsagsl.org if you’d like to RSVP for the class, and/or if you’d like to go attend Disability Rights Legislative Day in Jefferson City, MO.