Welcome Maddie, Our Newest Intern!

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A big welcome to our newest office intern, Maddie!! Maddie will be helping out around thoffice this doing a variety of different tasks. She is a recent graduate from Bellville East High School and will start work at the Cookie Dough Co. very soon. In her free time she enjoys hanging out with friends and cooking. Maddie has learned to cook a few different meals but her favorite is French toast and eggs.

Maddie really enjoys coming to DSAGSL programs and events.  She participated in two weeks of the Lydia Cox Memorial Bike Camp this summer and made it up on two wheels!!  Maddie came to Step Up for Down Syndrome on June 3rd with her TAGG cheer leading team to cheer on all the families as they walked, and everyone had a blast!  She also completed the 8 week Employment Academy classes and developed a visual resume as well as important professional skills she can now practice during her internship!  

In addition to hanging out with DSAGSL, Maddie also enjoys participating in the Special Olympics playing golf and doing gymnastics. She especially likes gymnastics and enjoys training with her gymnastics coach, Jennifer. She likes watching movies and listening to music which go hand-in-hand with her favorite movie, High School Musical.

Maddie is also planning on taking a trip with her family to Oregon and Idaho at the end of June for vacation. Maddie is very excited to be with us working at DSAGSL and we are excited to have her! We cannot wait for what lies ahead and are so lucky that she will be working with us!

Annie Jaco and Her Friendship Cards and Bracelets

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The Down Syndrome Association of Greater St. Louis gave a presentation at Barretts Elementary School where a self-advocate named Grace Mehan gave a very powerful speech. This speech inspired a fifth grade student named Annie Jaco to start a project where she made friendship bracelets and cards for individuals with Down syndrome. Along with the help of some of her classmates, they where able to find a way to raise money with their project and donated the funds raised to DSAGSL. Annie gave out the cards and bracelets Sunday at Step Up for Down Syndrome. Here is the letter she wrote us:

Dear St. Louis Down Syndrome Association,

My name is Annie. And I just finished fifth grade at Barretts Elementary School. A group of fifth graders helped with my project. We worked before and during school for a couple weeks, designing bracelets and cards. Many family’s donated the items we used to make bracelets and cards and some people gave us money.

 

Some kids liked the bracelets so much that they wanted to make one for themselves for 25 cents to show that they support people with Down syndrome. Each card that fifth graders made say special messages like “ you are amazing” or something like “smile it looks good on you.” we completed 81 bracelets with cards and raised 127 dollars. I love this project so much and I hope that everyone that gets a bracelet will love them too.

Sincerely,

Annie Jaco

This was such a wonderful idea! Thank you so much Annie!

Welcome Summer 2018 Interns!

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Welcome all of our summer interns, Kathryn, Rania, and Michael!

Hello, DSAGSL community! My name is Kathryn and I am proud to be welcomed into this wonderful community with open arms. I am a senior at the University of Missouri-St. Louis studying Communications. As a special events intern this summer, I will be helping the DSAGSL team with the planning and coordinating of special events. After graduation this following December, my goal is to work in special events for a hospital or non-profit in either Dallas or Chicago.

When I am not with the DSAGSL or at school, you can most likely find me at work! I work at Petals by Irene in Ladue as a floral designer. I also love going to any sports event, hockey especially. Down the road, I hope to accomplish a lot traveling. My bucket list is very long!

I look forward to a fun and productive summer with everyone and I hope I can help bring in more awareness!

 

Hello! My name is Rania Daoud, I am the programs intern at DSAGSL. I am currently a junior at Saint Louis University, majoring in Communication Sciences and Disorders and Psychology. After receiving my bachelors’ degree, I am hoping to go to graduate school for audiology. I would like to work as a pediatric audiologist, specifically working with infants in underdeveloped countries. At SLU, I am involved in the Muslim Student Association, Middle Eastern Student Association, National Speech and Hearing Association, and Mental Health Club.

I have a love of baking, and learning to bake new things. I love making cookies and Middle Eastern desserts the most. I have always dreamed of opening my own bakery after I retire. I also love to read, my favorite book being the Alchemist; I recommend the book to absolutely everyone. I am incredibly excited to be working at DSAGSL this summer.

Hi, my name is Michael and I will be working as a communications intern with DSAGSL! I am a senior at the University of Missouri St. Louis pursuing a Bachelor’s degree in Media Studies with a minor in Communication. I will be graduating this summer in August after I finish my internship.

I play in a fast-pitch softball league every Monday during the summer and enjoy playing golf as well. When I am not out playing sports I enjoy reading and watching TV. My favorite book is The Martian by Andy Weir and my favorite TV show is Mr. Robot. I am very excited to be working with DSAGSL this summer and cannot wait for what is in store!

Why We Step Up: Team Ella’s Love

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Hello everyone! We are Dan and Toni Agnew and have a 2 year old daughter, Ella, with Down Syndrome.

Bear with us as we head down memory lane for just a moment because we feel that it is important to give you a little back story as to how we came to be here St. Louis, Missouri.

We were in our early thirties, thriving, enjoying our freedom and life to its fullest when our paths crossed at the Denver airport. We met in the terminal awaiting a flight to St. Louis, which neither of us lived at the time.

Our souls collided and while we had spent only 3 days together over a period of 3 months, Dan proposed and we found ourselves living in Honolulu, Hawaii enjoying the turquoise waters and sandy beaches. Exactly one year to the date that we met in the airport we were married and expecting our first child.

Dan was promoted in his career and was to be moved to the corporate headquarters in St. Louis. I resigned from my position with the Muscular Dystrophy Association of Hawaii, our home was packed, and we were on a flight back to the mainland to begin our lives next chapter.

Just one day after arriving in St. Louis we received a call from the genetics doctor in Hawaii sharing the news of Ella’s diagnosis. Of course it was a shock to us initially but with the recommendation of our doctor in St. Louis we reached out to the Down Syndrome Association of Greater St. Louis (DSAGSL). After reaching out we made a visit to their office where we found a team of compassionate and caring individuals ready to help and guide us on our new journey.  We were paired up with a Family Support Coordinator who provided resources, literature, a big heart, an ear to listen, as well as support to prepare us for Ella’s arrival.

Our daughter Ella arrived 6 weeks early and spent over a month in the NICU where she continued to grow, thrive, and defy all odds. The DSAGSL gifted us with a welcome basket for our newborn baby girl, and it was hand delivered by Christy Klaus personally while Ella was in the NICU. We welcomed her home on Mother’s Day. We were scared but knew that we could conquer anything with our great love for each other.

Ella was only a few months old when we signed up for our 1st Step Up Walk. We didn’t have much time to prepare or fundraise, but we tried our best. Within just a few weeks we raised over $1000 dollars! This year will be our 3rd year participating in the Step Up Walk and we have increased our team donations and presence year over year.

Stepping Up for Down Syndrome means the world to our family. We step up in honor of our daughter as well as all individuals with Down Syndrome. This event provides the opportunity to give back to the DSAGSL for all they have done for our family and community. They have supported us through awareness, advocacy, friendship, education, activities, playgroups, and so much more.

Ella is now 2 years old and is working very hard to crawl and/or walk! Her favorite word is “dada” who also happens to be her favorite guy!  It’s been a busy 2 years of great things, growth, and changes. Ella works very hard at therapy 3x per week, enjoys attending therapeutic play groups, stroller rides, and nursery rhymes.

We are all so grateful to have one another and couldn’t dream of a better life. Isn’t it amazing how the universe is always preparing us and setting us up exactly where we should be? We don’t always see the big picture when we are busy living it day by day, but when we take the time to be present and reflect back we can connect all the dots and it’s really quite magical!! We can now see that St. Louis was the perfect place for our family. Ella is a miracle and we thank our lucky stars everyday for her presence in our lives and for choosing ‘us’ to be her parents and teachers.

When your big heart is choosing to donate to a charitable organization this year, let this be the one! Any amount makes a difference in the lives of so many. The services the DSAGSL provides for families are life changing and invaluable. We are very grateful and we hope you STEP UP with us!!

See you all at the walk!

Toni & Dan Agnew (Ella’s parents)

Team Ella’s Love

Derek Baker’s Nashville Bar Crawl!

Today’s post comes from Valerie Baker, an awesome mom who came up with a fun and creative way to celebrate her son Derek’s 21st birthday. Read more of what Valerie had to say about the exciting weekend!

How does a mom adequately celebrate the 21st birthday of an amazing young man with Down syndrome, who lights up the world of everyone around him and dreams of being a pop star?  She and 24 others from Missouri, Kansas, Illinois, and New York City, drive or fly to Music City (Nashville TN), home of Broadway Street and the best Honky Tonks anywhere!!!

Saturday night we enjoyed live music at the Grand Ole Opry.  At midnight, Derek ordered his first beer – Bud Light, of course!  Dilly! Dilly!  The day of his birthday, Derek and 20 people who love him donned their “Derek Baker Nashville Bar Crawl” t-shirts and began his celebration on April 8th, 2018 around 11am.  Our goal?  To get Derek on 21 Stages in Nashville.  Little did we know what was in store for us!

On Stage 1, the band and crowd sang “Happy Birthday.” On Stage 2, we met a fantastic up-and-coming artist, Amber DeLaCruz, who had Derek on stage for almost 10 minutes and tagged him in an Instagram post on April 11th saying, “This guy stole my heart Sunday #happybirthdayderek.”  On Stage 12, Derek took over the keyboard and got the crowd in a frenzy!  11 hours later,  the final 11 of us enjoyed the 21st stage!!!

What an incredible journey it was! What a blessed boy Derek is! And the rest of us also,

with such amazing family and friends! We collected lots and lots of laughs, hundreds of hugs, 3 drum sticks, 2 back up dancers, several guitar picks, a light stick from Bridgestone (according to Derek, a light wand), a $100 bill and forever memories! The day was beyond my imagination of all it could hold for Derek!  PRICELESS!!!

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!

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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

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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!