Down Syndrome Information Alliance
April 2015
Saturday, June 20, 2015 | 6pm – 10pm
Sterling Hotel | 300 H Street, Sacramento, CA 95814
 
DSIA Celebrates 10 amazing years of serving Sacramento area individuals with Down syndrome, their families and the professionals who serve them.  The evening will include food, dancing, a silent auction,raffles, a Self-advocate art gallery/auction,  a DSIA book launch and a fantastic guest speaker: Dr. Stephen Nowicki, Developmental Pediatrician at UC Davis MIND Institute and Davis Developmental Pediatrics Group.
 
Our goal is not only to create a fabulous and fun night out to celebrate the DSIA’s 10th anniversary, but also to raise valuable program funds to allow the DSIA to continue to support and empower people with Down syndrome, their families and our entire community!
 
*Dancing *Silent Auction & Raffle *Photo Booth Fun *Appetizers & Desserts *No-Host Bar *Self-Advocate Art Gallery/Auction *DSIA Book Launch
 
$100 | individual
$150 | couple
$21 | DSIA Self Advocate
 
 (limit three tickets per Self-Advocate)
Get your tickets now, space is limited! 
DSIA_Tickets_Button_150
 
 
 
 
Want to donate an item to our silent auction?
CLICK HERE to download the donation letter for this event.
Interested in sponsoring this event?
CLICK HERE to download the sponsorship package.
DSIA Trainings 
 
April 25 |Conservatorship and Special Needs Trust Workshop
3pm-5pm
Sierra 2 Community Center Room 9 | 2791 24th Street, Sacramento, CA 95818
 
What is a conservatorship? A conservatorship is a court proceeding through which a responsible person (called a conservator) is appointed by the court to care for another adult who cannot care for him/herself or his/her finances (called a conservatee).
 
Come get more specific information on conservatorships and special needs trust & bring your questions! There will be plenty of time for Q&A.
 
This training is FREE, but please register online.
 
 
May 30th | Keep Calm and Prepare for your 1st IEP Training
8:30am-12:30pm
Sierra 2 Community Center Room 9 | 2791 24th Street, Sacramento, CA 95818
 
Do you have a child turning three years old and you’re nervous about the first IEP? Don’t be! Dr. Lisa Lindsey, Director of Advocacy and President of the Center for Educational Rights, will conduct a workshop Keep Calm and Prepare for Your First IEP for parents/guardians preparing for their child’s transitional IEP. She will discuss topics such as the differences between early intervention and school-based services, the IEP process, the importance of assessments, what to expect in the IEP meeting, what happens if the team doesn’t agree, and information about timelines and future IEP processes. Parents who attended this workshop last year gave rave reviews, saying that they felt more educated and empowered to advocate for their children. Please note: this workshop is available exclusively to those who have never attended an IEP (workshops open to all families on various topics will be offered in the near future).
Light snacks and refreshments will be served.
 
Light snacks and refreshments will be served.
 
This training is FREE, but please register online.
 
 
Calling All Parents of Babies 0-18 months! 
 
Due to very low turnout, DSIA is no longer offering it's Parent Support Group Meetings.... But we want to know what you are looking for? Would you like DSIA to host a New Parent Breakfast every few months? Playdate/Social Gathering at a Library? All ideas are welcome! We want to foster an environment where you can connect with other family members and create a support system for the years ahead. Please contact Heather at heather@downsyndromeinfo.org with your ideas and thoughts. THANK YOU! 
Self Advocate News & Activities 
 
Saturday, May 16: Monster Golf
 
Monster Mini Golf | 12401 Folsom Blvd Rancho Cordova, CA 95742
 
$8-10 (depends on number or participants.
 
Please be there by 6:15 to register.  Reminder – it is very dark and can sometimes be very noisy.  We want it to be fun for one and all.  They do not take reservations, and we will play in groups of 4, so it would be great if everyone could all be there promptly so we could follow each other.
 

 
Access Leisure
 
Community programs for teens and adults with intellectual disabilities.
 
Monday, May 4: Video Pizza, 6:30-8:45pm, Senior Center, 915 – 27th Street
 
Saturday, May 9: Lunch & Cinema, 10:30am – 3:00pm, UA Market Square, 1739 Arden Way
 
Monday, May 11: Evening Social, 6:00-8:30pm, Senior Center, 915 – 27th Street
 
Saturday, May 16: Crafts Day, 1:30—3:30pm, Hart Senior Center, 915 - 27th Street
 
Tuesday, May 26: River Cats Game
 
CLICK HERE for May Events details. 
NDSC Governmental Affairs Action Alert 
SENATE AND HOUSE ESEA UPDATE AND ACTION ALERT
Good News and Bad News for Students with Disabilities
 
ESEA reauthorization (the process Congress uses to amend the law that was referred to as the No Child Left Behind Act) began back in January, but the week of April 13, 2015 will be a pivotal one. It is important to understand that the result we get in ESEA reauthorization now, will likely impact IDEA reauthorization later. NDSC has been very busy advocating for key provisions that specifically affect students who take an alternate assessment AND strong requirements that hold states accountable for the achievement of students with disabilities in both the House and Senate ESEA bills.

SENATE
On April 7, 2015 the Chairman of the Senate Health, Education, Labor and Pensions (HELP) Committee, Senator Lamar Alexander, and the highest ranking Democrat on the Committee Senator Patty Murray, introduced a bipartisan ESEA bill, called the Every Child Achieves Act of 2015. This bill will be debated, along with amendments offered by other Senators, on April 14, beginning at 10 a.m. This "mark-up" is expected to last several days.

As NDSC explained in its February ESEA Update and Action Alert, Senator Bob Casey and Senator Chris Murphy introduced two related ESEA bills that include critically important alternate assessment language. These bills were co-sponsored by Senator Murray. The good news is that the most important provisions from the Casey and Murphy bills have been incorporated into the bipartisan Senate bill. Also, Senators Murray and Alexander were able to negotiate a number of other provisions that are better for students with disabilities than those in the House bill. The bad news is the Senate bill still does not include strong enough requirements to hold states accountable for improving the achievement of students with disabilities.

TAKE ACTION:
Please call, email and/or visit both of your Senators with the following message. You can find your Senators' contact information at http://www.senate.gov/general/contact_information/senators_cfm.cfm.
 
CLICK HERE for more information from the National Down Syndrome Congress.
Important Action Alert from the National Association of Nutrition and Aging Services Programs (NANASP).
 
This year, the White House will hold its Conference on Aging. This important event is held only once every 10 years.  As such is it vital that as advocates with a professional interest in the health and well-being of US seniors, we advocate to include Malnutrition prevention and awareness in the Conference agenda.
 
Please take a moment to read this Action Alert and to get involved through the suggested immediate action steps, including signing the petition, submitting a comment to the Conference website, and sending in a copy of your advocacy.  As always, please share this resource with your colleagues and networks and please post to your social media sites.
  
CLICK HERE for the Action Alert
UC Davis MIND Institute Workshops 
 
Tuesday, April 21st 6 to 8 p.m.  Disability Rights:  Your ally when faced with roadblocks to services
The Center for Excellence in Developmental Disabilities at the UC Davis MIND Institute and the Think Transition workgroup invite you to the "Disability Rights California: Your ally when faced with roadblocks to services" workshop hosted at the UC Davis MIND Institute on Tuesday April 21st from 6-8 p.m.  This workshop is designed for people with disabilities, their families and support teams.  Topics that will be covered will include Services offered by Disability Rights California, an overview of common roadblocks with Regional Centers and Department of Rehabilitation, how to advocate for services, and, when necessary, use the appeal process.  The flyer for this event can be found HERE.

The workshop is free, but you must register at ddcenter@ucdmc.ucdavis.edu to attend.  For more information contact Diane Larzelere at 916-703-0268.

Saturday, April 18th 9 to 11 a.m.  Minds Behind the MIND: Learning and the Human Nature of Autism Spectrum Disorders
Learning and the Human Nature of Autism Spectrum Disorder.  The symptoms of Autism Spectrum Disorders (ASD) are most often described in terms of differences in social-engagement and communication. However, ASD also involves basic differences in the nature of learning. This presentation will discuss how recognizing the nature of these differences in learning have helped to advance research, assessment and, most importantly, interventions for affected children.
This workshop is free and does not require any registration.

Saturday, April 25th 9 a.m. to 5 p.m.  Rowell Family Empowerment will host a full day of trainings at the UC Davis MIND Institute.  
Trainings will include:
• IEP Preparation Training
• 504 Training
• DHH IEP Prep
• Positive Behavior Support Plan
• Passport to Their Future: Understanding the Transition IEP
• Understanding Your Student’s Evaluations
• Passport to Their Future: 18 Years and Beyond 
For detailed descriptions of the trainings of the April 25th Rowell trainings and to reserve your seat visit Register.RFENC.org or contact Wendy at (530) 226-5129. http://www.empoweryourfamily.org/events/rowell-family-empowerment-conference/
 
Down Syndrome Research Studies at the UC Davis MIND Institute 
 
Expressive Language Sampling in Down Syndrome
The goal of this study is to learn more about how samples of spoken language can be used to measure change over time in spoken language, problem solving, and behavior of individuals with genetic syndromes.
Who can participate: Individuals   With Down syndrome, ages 6-23 years
Number of visits: 3, over two years
What to expect: Collection of speech sample in three different settings: a conversation, looking at a picture book, and participating in a series of interactive activities with an examiner; assessment of problem solving skills language comprehension; parents will fill out questionnaires and participate in an interview
Compensation: Yes
Study Coordinator:  Michelle O’Neill, (916) 703-0226
 
CLICK HERE for more information.
 
A Cognitive Test Battery for Intellectual Disabilities (Toolbox)
The purpose of the study is to explore whether certain types of intellectual or cognitive tests are reliable, valid and sensitive to improvement in evaluating treatment responses among individuals with intellectual disability.
Who can participate: Individuals with fragile X syndrome, Down syndrome, intellectual disability, ages 6-25 years old
Number of visits: 2-3 at the MIND Institute
What to expect: Cognitive testing and questionnaires
Compensation: Yes
Study Coordinator: Stephanie Sansone, (916) 703-0461
 
CLICK HERE for more information.
 
Down Syndrome Phenotype Project
This study aims to identify the genetic and medical factors affecting cognition and language in individuals with Down syndrome.
Who can participate: Individuals with Down syndrome (with full trisomy 21), ages 11-25 years old
Number of visits:  1
What to expect: Cognitive assessment, questionnaires, providing a saliva sample and a small blood sample from your son/daughter, and access to health records
Compensation: Yes
Study Coordinator: Michelle O’Neill, (916) 703-0226
 
CLICK HERE for more information.
 
A Study of the Efficacy, Safety and Tolerability of RO5186582 in Adults and adolescents with Down Syndrome
The goal of this study to test the medication RO5186582 for improving learning, memory and language skills in individuals with Down syndrome.
Who can participate: Individuals with Down syndrome, ages 12-30 years old
Number of visits: 10
What to expect: Assessments given by our trained raters, blood and urine samples, ECGs, EEGs  and randomization to receive either active medication or placebo
Compensation: Yes
Study Coordinator: Laura Berkowitz-Sutherland, (916) 703-0301

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Address postal inquiries to:
Down Syndrome Information Alliance
5098 Foothills Blvd Suite 3-464
Roseville, CA 95747

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