DSACT Ambassador Feature: Meet Gracie!

DSACT Ambassador Feature: Meet Gracie!

IN CELEBRATION OF DOWN SYNDROME AWARENESS MONTH, WE WILL BE HIGHLIGHTING DSACT'S AMAZING GROUP OF AMBASSADORS DURING THE MONTH OF OCTOBER. 


GRACIE, 28
AUSTIN, TX

A graduate of Lake Travis High School and the ACC STEPS program, Gracie now lives in an apartment in the Lake Travis area with her friend and roommate, Cristina. For the past 7 1/2 years she has been a valuable member of the HEB team and prides herself on delivering excellent customer service. In her free time Graice enjoys playing basketball, skiing, and cheering on her alma mater at football and basketball games. Gracie has two brothers, Marshall and Parker, who she is very close with. Currently, Gracie is enrolled in a theatre class through UT's Informal Class system. Prior to the creation of the Ambassador program, Gracie represented DSACT at several major events, speaking at the DSACT Calendar Gala and the spring Cocktail Party. 


What are your goals for the future?

"My goals are to keep living in my apartment with my roommate, have my friends over, and to keep working hard at HEB."

What's something about yourself that  most people do not know?

"I know how to fly fish and I can ski blues and blacks when I snow ski with my family."

If you could swap lives with anyone else for a day, who would it be?

Tony Parker of the San Antonio Spurs.

Gracie is looking forward to an upcoming snow skiing trip with her dad - sounds like the perfect vacation for this hard worker!

GRACIE AND THE REST OF THE AMBASSADORS WILL BE AT THE DSACT BUDDY WALK ON OCTOBER 23RD, SO BE SURE TO STOP BY AND SAY HI!

DSACT Ambassador Feature: Meet Jordan!

DSACT Ambassador Feature: Meet Jordan!

In celebration of Down Syndrome Awareness Month, we will be highlighting DSACT's amazing group of Ambassadors during the month of October. 

Jordan, 17
Cedar Park, TX

Jordan is a junior at Cedar Park High School with a full schedule of commitments. She stays busy as a member of her school's varsity Cheer Team, performing at games and attending volunteer events in the community. During her summers and school breaks she is a volunteer in the office at NYOS Charter School. Jordan participates in several of DSACT's Recreational classes and enjoys spending her free time hanging out with friends at their favorite spots, Bahama Bucks and Sonic, and bowling with her brother.

Tell us a little bit about your life at school

"I love high school. This year my favorite class is Peer Assistance and Leadership (PALS). PALs go to elementary schools and help young students. We meet with them every week. When I was in elementary, I had a PAL and loved when she came to see me."

What are some of your goals for the future?

"I am hoping that I will make Cheer Team Captain my senior year. After high school I would like to go to college, get a job, and get married."

What's something about yourself that most people do not know?

"I have been taking piano lessons for one year." 

If you could swap lives with anyone else for a day, who would it be?

"I would love to be Meghan Trainor for a day. If I were Meghan, I would be a great singer and dancer and I'd love to be on the stage making people happy."

 

Jordan is looking forward to turning 18 in February and is eager to drive - she's working on convincing her mom to help her make it happen!

Jordan and the rest of the Ambassadors will be at the DSACT Buddy Walk on October 23rd, so be sure to stop by and say hi!

AND THE BUDDY WALK CONTEST #1 WINNER IS..

AND THE BUDDY WALK CONTEST #1 WINNER IS..

The winner of our first Buddy Walk Contest of the season is Liam's Lions with 15 participants registered as of August 18th!  Congrats go out to Liam's Lions and Team Captain, Regan Noveskey.  Noveskey family, you have just won a Family Fun Bowling Package from Mel's Lone Star Lanes. This package is good for 1.5 hours of bowling, shoe rentals for 4, and a $10 arcade gift card.

2015 Buddy Walk Contest #1 Announced!

2015 Buddy Walk Contest #1 Announced!

There's still plenty of time to register your Buddy Walk Team and take advantage of the upcoming Buddy Walk Contests!  The first Buddy Walk contest will end at 12pm on August 18th - the team with the most members will win a prize and get a shout out on our website and social media! Start rounding up your buddies at http://www.dsact.org/buddy-walk!

We've had 56 folks register during the first 5 days of registration for this year's Buddy Walk! Only 44 more before we hit 100 registrants - register your family & friends today! Click here to register for the 16th Annual Buddy Walk.  We can't wait to see you there!

Lori Tullos Barta Outstanding Educator Award

Lori Tullos Barta Outstanding Educator Award

To honor the work and memory of Lori Barta, DSACT will present The Lori Tullos Barta Outstanding Educator Award to three educators on October 18th during the Buddy Walk. It's easy to nominate an educator who has made a difference for your child; please fill out the form below. If you prefer a paper copy you may download and complete it here (English or en Español). Please fax to (512) 451-3110 or scan and email to buddywalk@dsact.org.

End of Summer Letter from the Executive Director: Back to School

End of Summer Letter from the Executive Director: Back to School

Friends and Family--

Welcome to the second edition of this letter from the Executive Director, my seasonal overview of what's going on at DSACT. One of our big goals for 2015 is increased transparency and better overall communication.

It may be late July, and we may still be in collective denial, but school shopping lists are being mailed out this week. It is time to cross off a few more titles on our summer reading lists before it is too late.

Fall is forever associated with back-to-school. As we wait for the heat to break and enjoy these last precious moments of summer, our minds here at DSACT have returned to education. Our preparation for the school year begins earlier than most, and we've got a lot in store for you.

Education is one of the most important things we do. That means educating new parents on Down syndrome fact and fiction at the moment they need it most. It also means supporting our adult members by offering scholarships for continuing education. The University of Texas at Austin offers semester-long continued educational opportunities for adults with Down syndrome and other intellectual disabilities. Professor Jon-Pierce Shimomura is a DSACT member and professor; he just finished teaching his summer course, Fun with Science: Building Better Brains.

Education is also one of the most stressful topics I discuss with parents, teachers, staff, donors, and Board members alike. When I think about our mission, one of the best things I think we can do is help you sort through options and next steps when high stakes decisions about education arise.

At times, every parent feels like they are trailblazing. In reality, many parents have been there before and many more will follow your footsteps. Our number one priority when it comes to education is ensuring all learn from those around us. It does indeed take a village.

DSACT has made a conscious, significant investment in education every year and this year is no different. We are doing more and we are spending more than ever before. I want to remind you of the services and resources we offer as the fall approaches, and encourage you to mark you calendars now.

Here we go!

In 2013, we hired Peggy Wolf, who is our Education Manager at DSACT. Many of you know Peggy, but many more ought to. For one, Peggy manages public seminars and the speakers needed for them. But more importantly, she's available to you to answer questions and talk through concerns on a one-on-one basis.

As a former teacher, Peggy is able to see and understand the perspective of both parent and educator. I strongly encourage you to find some time with Peggy. This is her job, and her life's work. You can do so by emailing her at peggy.wolf@dsact.org. Now is a great time to meet -- having a solid plan heading into each school year can make a world of difference.

Next, we recently launched a new DSACT website, for which a revitalized Resources section was a focus. Our education section is packed full of information like how to introduce your child to a new teacher or new school, a topic that comes up frequently. Did you know for example that a simple "All About Me" book is very helpful and most welcome by teachers? Such a guide allows your school to tailor educational methods and styles to your child's particular needs.

Information on the education page on the website is currently updated and covers a wide range of topics. We put a lot of effort into these resources, and I hope you will find them useful. Please check back early and often here.

Speaking of resources, the DSACT Facebook and Yahoo groups have grown more and more active. They are incredible peer-to-peer support networks for parents to not only discuss best practices, but also celebrate moments of joy. I strongly recommend that you subscribe to one or both. If you are a parent and would like to sign up to be a part of the yahoo group, please email DSACT-subscribe@yahoogroups.com.

Special education legal consultations are also available through DSACT at zero charge to you. These consultations can last up to two hours and generally focus on inclusion and placement. Another frequent topic is the provision of services including curriculum modifications. Our goal is to help you be a better advocate. I encourage you to schedule a consultation, which you can do here.

Finally, there are three brand new things that we are debuting this Fall that I want to outline.

One, mark your calendars for Thursday, September 24th from 6-9pm in the Norman Hackerman Building at UT. The LuMind research foundation in conjunction with DSACT will host a presentation on the current state of Down syndrome cognitive research.

Diseases like Alzheimer's occur in 75% to 85% of the Down syndrome population, and LuMind has funded several studies related to this correlation. Real improvements are coming in our lifetime, and I'd love for you to come learn more. A common misconception is that these medical advancements are coming "too late" for teenagers and adults with Down syndrome, but many treatments are being developed that can impact an individual at any age.You can find more information here.

Second, we will offer a workshop on improving academic outcomes for children and adolescents with learning and intellectual disabilities. The workshop will be lead by Christopher Lemons (bio), who is a very big deal if you know his work. We are thrilled to have him come to Austin for this session. We will be in touch shortly with the exact date and time.

Third, there will also be an important October seminar on communication between parents and teachers, led by Peggy. She will focus on the learning styles of individuals with Down syndrome. The workshop will be open to both parents and teachers to encourage collaboration. Please consider attending, and inviting your child's educators. We want to get everyone in the same room and on the same page. Our members have said repeatedly that this is a topic they care about enormously. More details will follow soon on this seminar also. 

Wow, that was a lot! 

I'm proud of how much we're able to accomplish this year and I hope you'll do two things in summary. One, please attend as many seminars, workshops and  events as possible. The donors who underwrite these expenditures (and our Board, who approves them) need to see attendance if we're to continue investing in education in these ways. 

Two, I cannot over-emphasize that you can help the whole community advance simply by sharing your experiences with others. One of the things I think we as a group can do a much better job of is opening up in a more transparent way, sharing our victories and closing feedback loops. None of us is as smart as all of us, and best practices are constantly evolving. Please help keep this community open and vibrant through the channels listed above, but also 1:1 with each other too. Bottom-up, word-of-mouth assistance has always been a pillar of our community.

I'm energized by a wonderful, relaxing summer full of activity and play. Many of our pools will soon close and our schedules will realign. I'm looking forward to a fall of learning --  about you, and about myself. 

Thanks for listening. Please keep this email on file and mark your calendars accordingly. I hope to see you all in the real world soon!

Cameron LaHaise
Executive Director

Upcoming Events & Announcements

16th Annual Buddy Walk
Sunday, October 18th
Registration will open Monday, Aug. 3rd
Click here for more information 

Kendra Scott Gives Back
Tuesday, September 29th
6-8pm at the Domain 
Click here for more information

LuMind Research Down Syndrome Foundation Research Presentation
Thursday, September 24th, 6-9pm
Norman Hackerman Building - UT Campus
Click here for more information

Adults Independent and Motivated
Welcomes interest from adults with intellectual disabilities who want to explore the option of apartment living with support. See the attached flyer to learn more or visit AIMtx.org!

2014 DSACT Conference Stipend: A Message from our Winner!

2014 DSACT Conference Stipend: A Message from our Winner!

In 2014, Gwyn Theodore was awarded the DSACT Conference stipend.  Gwyn and her family attended the 2014 International Mosaic Down Syndrome Association’s Research and Retreat conference in Williamsburg, VA. 

The purpose of the conference was to bring families with all forms of Down syndrome together for support, to hear about current research and to participate in research. There is very little information on Down syndrome and even less on mosaic Down syndrome. In order to better understand both of these syndromes and phenotypes that go along with them, more research needs to be done.

Down Syndrome Information Act (HB 3374) passed the Texas Senate

Down Syndrome Information Act (HB 3374) passed the Texas Senate

We are so happy to report that HB 3374, the Down Syndrome Information Act, passed the Texas Senate last night - we did it!!! Starting Sept 1, new and expectant parents in Texas will get current, accurate information about Down syndrome when they need it most - when they get a positive test result or a diagnosis of Down syndrome. This is SUCH a service to families at an incredibly stressful time in their lives. Thank you for all your phone calls; they made a difference! And a HUGE thank you to Rep. Geanie Morrison, Sen. Eddie Lucio, Jr., and Vilma Luna for their tireless support this legislative session.

Legislative Update: HB 3374, The Down Syndrome Information Act

Legislative Update: HB 3374, The Down Syndrome Information Act

This spring Texas Down syndrome organizations are working hard on a bill to ensure that new and expectant parents get current, credible information about Down syndrome when they get the diagnosis. If you started your journey with no information or bad information about Down syndrome, you know how important this issue is. HB 3374, the Down Syndrome Information Act, has passed the House and is waiting for an important vote in the Senate Health & Human Services Committee today. Great thanks to Rep. Geanie Morrison and Sen. Eddie Lucio Jr for their leadership and to Sen Charles Schwertner for scheduling committee testimony yesterday.

Senate Bill 37: Post secondary education for people with intellectual & developmental disabilities

Senate Bill 37: Post secondary education for people with intellectual & developmental disabilities

Senate Bill 37 would direct the Higher Education Coordinating Board to maintain a continuous study on the participation of persons with intellectual and developmental disabilities in higher education, including data on applications, recruitment, admissions, retention, graduation, and professional licensing at both the under graduate and graduate levels.

SB 37 was heard and passed out of the Senate Committee on Higher Education on Wednesday April 15.

Please support SB 37 so that data will be collected by the Higher Education Coordinating Board that can be used to study the issue of post secondary education for students with intellectual and developmental disabilities that can support the development of both current programs and future programs in Texas.

Important Update Regarding DSACT Legislative Efforts and HB 3374

Important Update Regarding DSACT Legislative Efforts and HB 3374

HB 3374, the Down Syndrome Information Act, is gaining steam as an important piece of Texas legislation; as with any new bill, it has undergone some changes since being filed in an effort to gain the widest possible support among legislators. The bill would require a health care provider to give information about Down syndrome to an expectant or new parent at the time positive test results for Down syndrome are delivered. The source of this required information would be the Department of State Health Services website; it would include current, evidence-based information about Down syndrome, as well as contact information for national and local Down syndrome organizations.

DSACT Proudly Supports HB3374

DSACT Proudly Supports HB3374

DSACT is pleased and proud to announce that Texas Rep. Geanie Morrison has filed HB 3374, a new bill that would require the provision of current information about Down syndrome to new and expectant parents at the time they receive test results that are positive for Down syndrome. The information would have to be evidence-based and reviewed by medical experts and national Down syndrome organization. The parents would also be given contact information for national and local Down syndrome organizations. This bill addresses the needlessly traumatic situation faced by many new and expectant parents who receive the diagnosis, but get no information about Down syndrome, or get only negative and/or outdated information. DSACT proudly supports HB 3374.