Welcome Karla to the DSAGSL Team!

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Hey DSAGSL, 

My name is Karla Toutlian,I am so excited to be a part of this organization as a new team member.I am a junior at Webster University studying, Sports Communication with an emphasis in marketing and social media. As the newest member of the team, I will be assisting the DSAGSL team with specific needs and social media as well.Once I graduate, I am hoping to work for the National Hockey League or for a company such as Go Pro. If that doesn’t work out I am so ready for anything that comes my way. I am excited to see how my future turns out but right now I am just enjoying the newest adventure in my life.

When school isn’t in session and I am not working at DSAGSL. I am hanging out in my hometown of Los Angeles,California. Spending time with my family and friends, I left behind for Saint Louis.I love going to hockey and baseball games .If I am not at either those events or with my loved ones, I am usually on the move. I love to travel. Once I am done with school Bali, Indonesia is on my next place to visit .

Looking forward to working with everyone who is apart of this wonderful organization.

Abeo’s Horse Riding Adventure

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Abeo is a self-advocate who works at the DSAGSL offices and has a great story to share about her love for horses. Here is her story:

Hi my name is Abeo, I am 27 years old,    

I like horses. Because they are fun to ride. My father took me to ride on the horse. Every year he took me to ride on the horse on my birthday. It was fun. The horse’s name is Jerry the horse. Jerry became one of my best friends, we had connections from the start to be together. I like to ride with Jerry he is the best horse in the world. When I walk up toward the horse. I was not scared, he is the most beautiful horse I ever seen. Someday I’d like to have a horse of my own, because of the activities that horses can do. Horses are good animals because they are compassionate with people.

Horses like to graze in the grass. They like to have fun. Horses communicate with other horses. That’s the way I like them. They make me happy inside. I’d like to find a place to go horse riding.

Thanks for the great story Abeo!

Robert Berger and His Cousin Kyle

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Rob Berger has been a DSA board member since 2017 and today he shares the story of how he became involved with the DSAGSL. It all started with his cousin Kyle, Rob tells his story here:

My 34 year old cousin, Kyle, was born with Down syndrome as well as a variety of other ailments. Kyle lives in Southern California and I don’t get to see him often. Over the years I’ve heard a lot about the struggles my aunt and uncle have encountered raising a child with Down syndrome. I’ve also been incredibly inspired to hear about all of the programs available to Kyle and his friends. When Kyle was born, his doctors didn’t paint a rosy picture for his future, but as a result of organizations like the Down Syndrome Association, Kyle is living a happy and productive life. He is a joy to be around and the life of every family get together. I jumped at the chance to join DSA with the hope that I can be a small part of a similar success story for another family.

Thanks for sharing your story Rob!

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!!!