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!