Words from a Self-Advocate: Susie Stufflebam

This week we have some encouraging words from

Susie was a recipient of the Self-Advocate of the Year Award in 2017!

Susie, who explains how she faces life’s challenges. Here is her passage, titled “Different Types of Advice:”

Sometimes it’s hard to deal with changes and to face challenges in your life with anything that is close to you. I have a hard time dealing with changes and challenges myself. I try to push myself to do some challenges by starting with small & medium levels. Sometimes there are things that I can’t handle, but I listen to some advice from friends and family that are close to my heart. Don’t give up on yourself, nothing else matters as long as you have friends. Just keep your head up high & make a change. When you can’t control what’s happening, challenge yourself to control the way you respond to what’s happening. That is where your power is! Never let yourself get too comfortable. Seek challenges, push & ignore what others think.

Thank you for the inspiration Susie; these are great words to help during hard times!

Susie playing the guitar at a talent show!



Intern Lexie Smith on how she was able to raise $1,500!


Hello Everyone!

My name is Lexie Smith and I’m one of the great spring 2018 interns! I am currently a senior at UMSL and will be graduating in December of 2018 with a B.A in Communications.  It doesn’t take long working at DSAGSL, to become inspired and want to help this amazing organization in any way you can.

My family owns a Bridal Boutique in Chesterfield called Mia Grace Bridal. It started this January that we wanted to give back to our community in any way we could. In January we donated $20 for every dress sold to Toys for Tots for the holidays. In February we donated to the Mighty Oaks heart foundation to help children that were born with congenital heart disease. And when we were thinking of an organization to donate to for the month of March, I couldn’t help but suggest DSAGSL especially since March is national Down syndrome awareness month specifically March 21st.

Safe to say my family loved the idea and immediately set up a partnership with DSAGSL and would donate $20 for every wedding dress that was sold. To kick start our month, we set up a Facebook-Live video for the first day of March and invited Abigail Beckord and self-advocate Jennifer to talk about the wonderful things that DSAGSL does to help families and create awareness. It was a hit!

Not only did we promote it through social media, but every Saturday and Sunday (our busiest days of the week) we wore our DSAGSL t-shirts and crazy socks! If the bride bought she got to sign a yellow and blue ribbon and got to hang it on our door. The outcome was fantastic! We were able to raise $1500 and awareness to this amazing organization.

Thank you DSAGSL for all the incredible things you do for families, it is truly humbling interning here.

Gear Up for the Annual Bike Camp!

If you’re in need of something exciting to do this summer, look no further than the annual Lydia Cox Memorial Bike Camp! Our June sessions are right around the corner, and you don’t want to miss out on an awesome experience!

Volunteers lending a hand at the 2017 Bike Camp!

For most of us, our earliest and most enjoyable childhood memories include learning how to ride a bike. Bike Camp allows individuals with developmental disabilities 8 years of age and older to make those memories. Participants learn how to ride a conventional two-wheeled bike, which will help to increase their confidence and independence.

The first camp will be held Monday, June 4th- Friday, June 8th at South Technical High School in South County.  The second session will be held from Monday, June 11th- Friday, June 15th at Harvester Christian Church in St. Charles. You can find camper registration forms here. Hurry…bike fittings are already underway!

As a volunteer, you’ll enjoy the bike camp as well! It’s the perfect opportunity to have some fun and support a great cause! To learn about volunteer opportunities for one or both sessions, e-mail abigailbeckord@dsagsl.org or visit our website for more information!

Intern Zoë Wallis on How Gender Studies Influences Her Work at DSAGSL


Hi everyone!

My name is Zoë Wallis and I’m one of the spring 2018 interns. I attend University of Missouri-St. Louis (UMSL) and will be graduating in May 2018. (Two months to go!!) I will graduate with a B.A. in Communication and a minor in Gender Studies. I will also receive my Gender Studies certificate. I am a St. Louis native and I am honored and proud to intern here. I truly feel that I am making a positive impact on the Down syndrome community and hope to continue doing so for the duration of my internship.

Since declaring Gender Studies as my minor nearly two years ago, I’ve received many questions about it as an academic discipline. Most of the questions revolve around the idea of “Well, what exactly is it?!” After a laugh, I typically explain that it is a discipline that deals with the intersections of biological sex, gender, ethnicity, and socio-economic class. It also has intersections of (dis)ability.

Basically, Gender Studies focuses on the notion that being a combination of two or more of the aforementioned categories can raise or lower your status in society. This directly relates to a person’s level of privilege. As Gender Studies scholars, we analyze these levels of privilege through feminist theory and literature. We also work to create new scholarship that breaks down stereotypes and barriers and helps to cultivate a more open-minded and inclusive world.

Gender Studies has changed my life. Not only has it helped me to become more culturally aware, it has challenged me personally (and the people around me) to become more inclusive in everyday life. I am much more sensitive about the way I present ideas and make sure to always use person-first language. Working with and for individuals with Down syndrome, I feel this is especially relevant. First and foremost, people are people. As a society, we must work towards always remembering this when we speak. Language is important and when we do not acknowledge individuals as people first, we take away their ability to have likes and dislikes, things they are good at and not so good at, hobbies and interests, etc.

I am lucky to be surrounded by such amazing staff and mentors at DSAGSL who allow me to bring my Gender Studies knowledge into my work here. I am learning so much as I go and I could not be more proud to be able to represent the Down syndrome community in my work!

Happy World Down Syndrome Day from Grace!

To wrap up the 21 Days of Abilities campaign, we sat down to talk with Grace Mehan. Grace is a long-time DSAGSL volunteer and participates in tons of activities in her hometown of Kirkwood. Check out more of what Grace has to say!

Hi! My name is Grace and I want to say Happy World Down Syndrome Day! For this awesome day, I wanted to share some special things about me.

I work at Irene’s Homemade Granola, and at Mike Duffy’s and Kirkwood Brewing Station as a host. When I’m not working, I like to volunteer with the DSAGSL. I’m in a reading group, play basketball in the Special Olympics, and practice Tae Kwon Do with the Girlfriends Group. I love being a part of the Kirkwood community!

Grace having fun at a cooking class

Some things I like to do when I’m not working include working out, playing Just Dance for Wii, and watching “Chopped.” My favorite hobby is cooking healthy foods. I love it so much, I want to have my own cooking show! I speak Spanish and help kids learn sign language. I also love music, and I recently went to concerts with artists like Adam Levine and Panatonix!

For me, being a self-advocate means stepping up for yourself and being responsible. It’s important to talk to people about Down syndrome and what it really means. I love being around children, so volunteering at the New Mother’s Luncheon is a lot of fun. I like to go to presentations with DSAGSL and

Grace helping out at the New Mother’s Luncheon!

talk to elementary school kids about Down syndrome. It’s fun to teach them about Down syndrome. It helps them to be better friends and learn how to respect everyone, including people with Down syndrome.

Three words I would use to describe myself are: talkative, friendly, and curious! Thanks for reading and I hope you enjoyed learning more about me!

Ready to Work Q&A!

Employment Coordinator Makini Anwisyi with Employment Academy participant Aaron Alster

Research shows hiring people with disabilities makes good business sense. Employees with disabilities are more productive, have lower absenteeism and stay in their job longer than their peers without disabilities.

The DSAGSL Ready to Work Initiative is dedicated to building relationships with companies and businesses in St. Louis, to raise awareness about why hiring individuals with Down syndrome makes sense for them and their community.  Additionally, the Ready to Work programs like the Employment Academy, Jr. Academy, Pop-Up Snack Shop, and DSAGSL Office Internship Program, work with self-advocates to explore their interests, build job skills, create written and visual resumes, and find meaningful employment.

Individuals with Down syndrome want to work and feel fulfilled in their jobs for the same reasons everyone does! Just ask the participants at our recent Employment Academy Class:

Q: What do you like about this class?

A: Being around people and making new friends –

A big thanks to the awesome group that attended the recent Employment Academy class!

Andrew Suelmann, age 32

Q: What have you learned?

A: I learned about different jobs, people, and I learned that I want to work at Applebee’s and at a hospital! – Aaron Alsterer, age 29

Q: Why do you want to get a job?

A: To get money! – Christine, age 21

A: To be friendly, work, and learn skills. – Seth Kilnzey, age 20

Q: What type of job do you want?

A: Work for NCIS – Leah Hammann, age 22

A: Work as a babysitter with kids – Naddie, age 20

Q: What would you like to buy/do with the money you’ll earn?

A: Save money for college – Leah

A: Big house (with my own restroom) – Christine

A: Clothes, new guitar case, guitar pick – Aaron

A: New apartment, video games, go to the movies, go out to eat with friends – Andrew

If you would like more information about hiring awesome and hard-working individuals with disabilities, please contact Erin Suelmann at erin@dsagsl.org or Makini Anwisye at makini@dsagsl.org. You can also learn more on our website!


Letter from Self-Advocate Paula Mass

Paula (on the right) with her friend Suzie in Washington DC for 2017 NDSS Buddy Walk

March 14th is Disability Rights Legislative Day. It is a day to advocate for equal rights to individuals of all abilities, and gives individuals with developmental disabilities the opportunity to voice their needs and wants. Paula, one of our self-advocates, wrote a letter about how she has found her voice while interning with DSAGSL for more than five years. We hope her inspiring words encourage others to be confident in advocating for themselves!

“My name is Paula Mass and I have been a DSAGSL office intern since 2013. Since coming to work here as an intern, I have learned to be a better self-advocate.  I went to the state Capitol last year to be an advocate and to Washington D.C. I am also now on the DSA Board of Directors!

I work at the DSA Office on Mondays. I am usually there from 9:00-4:45.  I do many things when I am at the office. I help with the mailings that go out, I get the mail when it comes in and pass it out, I work on the birthday cards that go to all of the members, and any other things that I am asked to do. I like being an intern at the DSA.  I remember when I was asked to be an intern at the office. I was more than thrilled to become a part of the DSA team.
This job has helped me to be a better self-advocate. I did not know what a self-advocate was at first. I was sort of stuck in my own ways before, but I had to move past that. The more I learned about how to talk to people who came into the office, even though I was scared, it helped turn my attitude around. It wasn’t easy at first, but everyone at the office was patient with me. I guess I was shy.
Later, I was asked to be on the Board of Directors for the DSAGSL. My father talked to me about having a spot of the board as a self-advocate and he told me what that would mean. That meant that I would have to speak up even more. I was scared again, but I gave it a try.
I speak up more now than I ever did. I speak up about things that are important to me. I also speak up about things that are Down syndrome. I speak up for my friends and family if I need to. I am a self-advocate and I am proud of it. Just think, this all came from becoming an intern here at the Down Syndrome Association Office.”

Paula (front center in purple) with group in Jefferson City, MO for Disability Rights Legislative Day 2017

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!