June 2013
Table of Contents
Upcoming Events
 
Dream Night @ the Sacramento Zoo & Picnic in the Park
Friday, June 7
5pm

Open Presntation on Educatin & Reading and Adult Life with Ds
Saturday, June 22
4pm
 
Picnic and Playdate @ Lone Tree Park, Rocklin
Saturday, June 22 10am
 
SunSplash Night slides, Golfland Sunsplash
Monday, July 15 6pm
 
Picnic and Playdate @ Bertha Henschel Park, East Sacramento
Saturday, July 27 10am

After NDSC Conference Sharing Session
Saturday, August 3 11am-2pm
 
Family BBQ and Camp
Sunday, August 11 2pm
 
Picnic and Playdate @ John Kemp Park, Folsom
Saturday, August 17
10am
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 DSIA Raises $600 and Offers a $1000 Reward  

The Down Syndrome Information Alliance has issued a $1,000 reward for information leading to the arrest and conviction of the two individuals who are alleged to have scammed a Sacramento State University student with Down syndrome out of hundreds of dollars on Thursday, May 16, 2013. The suspects accompanied the victim around the Sacramento State University Campus and had him buy hundreds of dollars in gifts cards with the promise that he would receive 2 laptops in exchange.  After the gift cards were purchased, the suspects took the gift cards and fled. Campus security cameras captured pictures of the suspects.

SUSPECTS
  
CLICK HERE to see more pictures
 
If you have any information about this incident or recognize the individuals in the surveillance pictures, please call Sacramento State police at (916) 278-6851.
 
If you would like to make a tax deductible donation to the DSIA Luke Burke Fund, please CLICK HERE. We have already reached our $600 goal, and money now raised will help with a reward to find and prosecute these criminals.
 
CLICK HERE to watch the News 10 story.
 
CLICK HERE to download and share the Reward Flyer
 
Watch the Follow Up Story on News 10:
 
DSIA VIDEO
 
DSIA JUNE EVENTS 
 
Dream Night @ the Sacramento Zoo & Picnic in the Park
Friday, June 7 | 5pm
Join DSIA families for a picnic at William Land Park (bring your own dinner) and then enjoy The Sacramento Zoo for Dream Night – a special event just for families of children with Special Needs.
William Land Park, Area GA8 for picnic. CLICK HERE for a map of William Land Park
CLICK HERE to learn more about Dream Night
 
Team and Adult Dance Lessons
Saturday, June 8 | 6:30pm
Sign-In: 6:00pm
Lessons and Dance: 6:30-8:00pm
Sierra 2 Community Center, Studio 3 | 2791 24th Street, Sacramento CA 95818
$10/lesson | $5/DSIA Member
CLICK HERE to reserve your lesson
CLICK HERE to become a DSIA Member. Memberships are $35 and good for 365 days. Confirmation of membership and discount codes will be emailed within 24 hours.
CLICK HERE to download, print and share the PDF flyer for the Dance Lesson series
 
New Parent Support Group
Thursday, June 20 |6:30 pm 
Come meet other parents in a safe and comfortable space to discuss all aspects of being a parent to a baby with Down syndrome  - joys and challenges alike! Bring your questions – everything is welcome – or come to listen and share with others. Make friends and develop a support system for the days and years ahead.
A DSIA Parent to Parent Mentor will guide each meeting, answer any questions and offer support to new families.
This support group is for families who have a prenatal diagnosis of Down syndrome or who have a baby, 0-18 months old with Down syndrome. Please do not bring other children.
WarmLine Family Resource Center
6960 Destiny Drive Suite 106, Rocklin
OR
American Legion Meeting Room *
523 Bush Street, Woodland
CLICK HERE to download, print and share the PDF flyer for the New Parent Support Group
*Indicates Spanish speaking DSIA Parent Mentors will be Moderating the Group also
 
Picnic and Playdate @ Lone Tree Park, Rocklin
Saturday, June 22 | 10am
Bring a picnic for your family, be prepared to play in the water structure, meet DSIA families and have some fun at this great park in Rocklin!
CLICK HERE for more information about Lone Tree Park
 
Open Presentation on Reading & Language and Adult Life with Down Syndrome
Saturday June 22 | 4pm
MIND Institute | 2825 50th Street, Sacramento, CA  95817  
Professor Sue Buckley OBE - Director for Science and Research, Down Syndrome Education International
CLICK HERE to register for this presentation
DSIA JULY EVENTS 
 
SunSplash Night slides, Golfland Sunsplash
Monday, July 15 | 6pm
DSIA’s 3rd Annual Night at Sunsplash!! THis is a much loved night of meeting new people, seeing old friends and enjoying Sunsplash Nighttime Water slides!
Thank you to Susnsplash for their generous discount, we are able to offer tickets at a reduced rate from the usual $19.99
Ticket Prices:
$13 (ages 3 and up) | $7 (ages 3 and up) DSIA Members
$3 (under 3) | $1 (under 3) DSIA Members
CLICK HERE to purchase tickets. Tickets WILL NOT be sold at the door and all tickets must be purchased by Friday July 12th at NOON.
 
CLICK HERE for directions to Golfland Sunsplash
CLICK HERE to download and share the PDF

Teen and Adult Dance Lessons
Saturday, July 13| 6:30pm
Sign-In: 6:00pm
Lessons and Dance: 6:30-8:00pm
Sierra 2 Community Center, Studio 3 | 2791 24th Street, Sacramento CA 95818
$10/lesson | $5/DSIA Member
CLICK HERE to reserve your lesson
CLICK HERE to become a DSIA Member. Memberships are $35 and good for 365 days. Confirmation of membership and discount codes will be emailed within 24 hours.
CLICK HERE to download, print and share the PDF flyer for the Dance Lesson series
 
New Parent Support Group
Thursday, July 18 |6:30 pm 
Come meet other parents in a safe and comfortable space to discuss all aspects of being a parent to a baby with Down syndrome  - joys and challenges alike! Bring your questions – everything is welcome – or come to listen and share with others. Make friends and develop a support system for the days and years ahead.
A DSIA Parent to Parent Mentor will guide each meeting, answer any questions and offer support to new families.
This support group is for families who have a prenatal diagnosis of Down syndrome or who have a baby, 0-18 months old with Down syndrome. Please do not bring other children.
Elk Grove Library
8900 Elk Grove Blvd., Elk Grove
OR
American Legion Meeting Room *
523 Bush Street, Woodland
CLICK HERE to download, print and share the PDF flyer for the New Parent Support Group
*Indicates Spanish speaking DSIA Parent Mentors will be Moderating the Group also
 
Picnic and Playdate @ Bertha Henschel Park, East Sacramento
Saturday, July 27 | 10am
Bring a picnic for your family, be prepared to play in the beach entry toddler pool, meet DSIA families and have some fun at this great park in East Sacramento.
CLICK HERE for more information about Bertha Henschel Park
Parent Mentors Needed 

DSIA is looking for Parent Mentors in
Yuba County and El Dorado County. 

To learn more about our Parent Mentor Program, click here

If interested, contact Heather Green at heather@downsyndromeinfo.org

 
Final Notes from the DSRI Annual Meeting


            
 

The addition of Dr. Alberto Costa and the development of a standardized data collection protocol across all nine partner sites of the Down Syndrome Research Initiative (DSRI) were tremendous points of discussion during this year's DSRI Annual Meeting held May 22.

This excitement, however, quickly sobered upon hearing from Dr. Costa that research shows the amyloid plaque and neurofibrillary tangles, commonly related to early onset dementia and Alzheimer’s, can begin growing in our children with DS as early as 4 months old.

Think of that for a moment......

As much as 50% of the DS population will be susceptible to early onset Alzheimer’s. However, science has yet to yield a cure or even potential preventative measures to stop this degeneration of brain function from happening because DS researchers and investigators lack the funding and necessary research infrastructure to conduct their work.

At the DSRI Annual Meeting, we heard Dr. Costa lament the fact that he had accepted $2 million in funding from a foundation in Brazil to fund one of his clinical trials because of the lack of support from the U.S. Federal government and our community at large.

Given the data showing early onset Alzheimer’s can manifest itself in our children's lives much sooner than once believed, every day becomes a ticking clock that presents a level of urgency and critical need that holds each of us accountable in the DS community.

Unless researchers have the basic tools to conduct their work, there can be no breakthroughs in our understanding of dementia, early cognitive decline and Alzheimer’s, or the host of other chronic illnesses that impact our loved ones with DS.

For three years, the nine DSRI partner institutions have set aside their own institutional agendas, and volunteered their time, resources, and expertise to move DS research forward in ways that have never been attempted. This selfless dedication to our loved ones with DS demands our respect and support.

In the coming weeks, DownSyndrome Achieves will announce a sweeping initiative that will strengthen current DS research capabilities for cognition and chronic illness researchers alike nationwide; irrespective of mission, vision, philosophy or affiliation.

It's time we all reimagine the possible
.



 
A One-on-One Discussion with Alberto Costa


            
 

Last week, we spent an incredible five hours talking with acclaimed neuroscientist, Alberto Costa, about his groundbreaking work on potential treatments for enhancing cognition in persons with DS. 
 
Dr. Costa is credited for publishing one of the first studies ever to show a drug could normalize the growth and survival of new brain cells essential for memory and spatial navigation. He is also credited for completing the first randomized human clinical trial of a DS cognition drug.
 
Dr. Costa is compelling, and we are pleased to welcome him as the newest member of the Down Syndrome Research Initiative (DSRI). 



ABOUT THE DOWN SYNDROME RESEARCH INITIATIVE:
The Down Syndrome Research Initiative (DSRI) is a first-of-its-kind collaborative founded in 2010 by DownSyndrome Achieves to address the challenges and barriers that inhibit DS research and to work aggressively to develop solutions that drive innovation and scientific discovery. It is comprised of geneticists, neuroscientists, behavioral and developmental pediatricians, diagnostic radiologists, psychologists, social workers, and speech/OT/PT therapists, from nine academic and pediatric institutions, including:


 
 
JOIN DSIA! Stop by and Say Hi!  
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Ready for Lessons?
swim
4 Things to Know 
and Look for
  • Warm pools: Water heated to around 92°F is especially therapeutic for children with cerebral palsy, spina bifida, or arthritis because it encourages flexibility and circulation.
  • One-to-one instruction: This allows instructors to tailor the lesson for your child's specific needs. Attending classes consistently with the same instructor also builds trust and friendships, which makes any activity more fun and engaging.
  • How to hold your child: For younger children or those with physical disabilities, Maxon recommends starting the child in the vertical position, as opposed to the typical horizontal one: "It's related to safety," she explains, adding that it also aids circulation and "[stimulates] the neurological pathways for pre-walking and bilateral coordination, communication, focus and intent."
  • Accessibility: Most public pools are ADA-accessible and offer ramps and wheelchair lifts to help swimmers in and out of the water.
Looking for Lessons?  Click here for local spots offering instruction for kids with special needs. 
 
 
 
Get Cookin'
chickenAt Dandelion, we love sharing ideas, suggestions and fabulous new finds that make parenting a little easier and a lot more fun. On our "Healthy Eating" page, you'll find easy-to-make, kid-approved recipes that run that gamut of dietary needs: gluten-free, low sodium, no sugar, high protein, wheat sensitive-friendly, and more. Happy, healthy eating!
 
 
 
All Dressed Up
 
dress up
Whether alone or with friends, kids love to dress up! Create a Dress-Up Box for your little ones by saving old Halloween costumes and wigs, bridesmaids' dresses or sports uniforms to inspire your child. Their imaginations will hit high gear as they dig into an assortment of hats, shoes, purses, suit jackets, scarves, jewelry and other various costumes, disguises and superhero gear. 

As children act out various roles, they are practicing their social skills, figuring out how they fit into the world, exercising their imaginations and having a ton of summer fun!
 
 
 
 
Win a Set of StimStix
 
stimstixDesigned by a local autistic high school student, these are now being used by both autistic and ADHD students to satisfy their need to "stim" without causing disruption, to help kids focus in class, reduce impulsive behaviors and increase fine motor skills.
 
 
 
 
 
Would you like Dandelion available at your school?
summer 13 sac
 
That's simple! You just have to ask and we'll get you as many copies as you need, all for FREE.  All you have to do is e-mail us with the school name, address and number of magazines you'd like.
 
 
 
 
 
Visit us at goDandelion.com 
where we embrace unique children and their families.
 
Soft Touch Booster Seat 
booster
Not all booster seats are created equal - especially for kids with special needs. That's what makes the Special Tomato so awesome. The company, founded by parents of a daughter with Down syndrome, produces a Soft-Touch Booster for kids who want to sit just as tall as their parents or caregivers at the dinner table. What makes this anti-microbial and latex-free booster stand out above the rest is the integrated support and restraint it provides with a three-point safety belt. Meant for kids with minimal seating needs, the seat gives added hip support and encourages proper posture. Making it the perfect on-the-go seat for your unique child.
 
 
 
Autism E-News
 
autismDandelion is now publishing a FREE monthly e-newsletter exclusively for families living with autism. Sign upHERE.
 
 
 
 
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UC Davis MIND Institute Summer Institute on Neurodevelopmental Disorders:  Research to Practice 
August 2, 2013
Brochure       Program at a Glance        Online Registration  
New Location:   UC Davis Conference Center   
Hotel          Discount Travel
HIGHLIGHTS
Keynote address on environmental exposures that may contribute to autism
Evidence-based practices for medical and educational interventions
Updates on changes in health insurance coverage for developmental disabilities
Advocacy and family support
ACCREDITATION
The University of California, Davis, Health System is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians. 
CREDIT DESIGNATION
The University of California, Davis, Health System designates this live activity for a maximum of 6.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
FOR MORE INFORMATION
UC Davis Health System, CME, 3560 Business Drive #130, Sacramento, CA 95820-2161
(916) 734-5390 - (866) CME4EDU (263-4338) toll free

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