Allie Andrews and Her Involvement with Down Syndrome from Kansas City to St. Louis

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Allie Andrews’ job took her from college, to Kansas City, and all the way to St. Louis, but all that traveling never stopped Allie from remaining an active member in the Down syndrome community. Here is the story of Allie’s involvement with the Down syndrome community and how she became a member of the Young Friends Board for the Down Syndrome Association of Greater St. Louis:

Hello! My name is Allie Andrews and I am the current Vice President of the Young Friends Board for the DSAGSL. I was first introduced to the Down syndrome community at an early age, as my cousin, Emily, has Down syndrome. Growing up, I learned how to be an advocate for people of all different abilities and I knew that was something that would remain important to me throughout my life. After attending college and getting settled in my job in Kansas City, MO, I decided to volunteer at a few events hosted by the Down Syndrome Guild of Greater Kansas City (DSGKC). It didn’t take long for me to realize that I wanted to become more active in the organization and I started volunteering during their monthly children’s learning program. During these sessions, young kids with Down syndrome were able to participate in stations to learn different sensory, motor, reading, and math skills while their parents learned how to reinforce those skills and behaviors at home. I loved getting to know the families and watching the kids grow and learn from year to year.

When my career brought me home to St. Louis in late 2015, I knew I wanted to be a part of the local Down syndrome community. However, my job involved substantial travel at the time. Fast forward a year and a half later, I moved into a different role that was based solely in St. Louis. Soon after this transition, I noticed that the Young Friends Board for the DSAGSL was hosting an informational meeting and I decided to attend. A few days after the recruiting event, I submitted my application to join the group and am so glad that I did! Being a Young Friends Board member and a member of the DSAGSL community is incredibly rewarding and I can’t wait to see what we accomplish this year!

Incredible story Allie, thanks for sharing!

National Institutes of Health Receives an Increase in Funding for Down Syndrome Research

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A historic 65% increase in funding for Down syndrome research at the National Institutes of Health (NIH) was announced for the 2018 fiscal year. The decision to increase funding comes from the Congress’ House Labor and Health and Services Appropriations Subcommittee. This fantastic news shows that Congress recognizes the importance and benefits of Down syndrome research. It also demonstrates the incredibly strong influence of the Down syndrome community that came together to advocate for funding. This increase in funding will allow the NIH to conduct extensive and innovative research in Down syndrome. Due to the increase, the NIH was able to create a brand new trans-NIH initiative dedicated to individuals with Down syndrome.

That initiative is known as the INCLUDE Project which stands for INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE. The details behind the project were recently unveiled and will focus on improving the health and well-being for individuals with Down syndrome. It will also put an emphasis on learning about risk and resilience factors that individuals with Down syndrome may share with those who do not have Down syndrome. This project will involve 18 institutes at NIH and will look at three aspects of Down syndrome research. 1) To conduct targeted based science studies with high benefit potential. 2) To assemble a large study population of individuals with Down syndrome. 3) To establish a clinical trials network for therapies to be tested on co-occurring conditions in individuals with Down syndrome.

This project, as well as the additional funding awarded to the NIH for Down syndrome research, could become extremely beneficial in producing more treatment options for individuals with Down syndrome. Combining the research that comes out of the INCLUDE Project with that of the LuMind RDS, Global Down Syndrome Foundation, and Jerome Lejeune could produce breakthroughs in research as well as speed up development of new treatment options for individuals with Down syndrome. This is all incredible news for the Down syndrome community and hopefully we can learn more from the new research project very soon!

Information gathered from the LuMind Foundation.  LuMind is great place to find information on all things Down syndrome research.  Visit www.lumindrds.org to learn more and to sign up for research project notifications and other Down syndrome research news.

Click here for more information on the funding increase: https://www.lumindrds.org/historic-65-increase-for-nih-down-syndrome-research/

Click here for more info on the INCLUDE Project: https://www.nih.gov/include-project/include-project-research-plan

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!