Wishing you and your family a very Merry Christmas & Happy New Year!
Encouraging and Inspiring Families with Down Syndrome Positively!
Wednesday, December 21, 2011
Monday, November 21, 2011
2012 DSAGSL CALENDAR!
Calendars are $10 and $2 shipping.
(ordered ours and can't wait to see all the cuties!)
"ONE OF THEM IS MY SIB"
plus15 Video Contest: "One of Them is My Sib!" |
The plus15 campaign is launching a "One of Them is My Sib" video contest for siblings who want to show the world what their sisters and brothers with Down syndrome are capable of. From November 14-December 9, plus15 will be accepting video submissions of up to 3 minutes long to post on our YouTube channel. Then, we'll open up the videos to community voting! Two prizes will be awarded: People's Choice award, for those with the most "likes" on their videos, and a "Judge's Choice" award, which will be determined by a panel of judges from the Down syndrome community! Winners in both of these categories will receive gift certificates to Amazon.com! Find out more HERE and SPREAD THE WORD! |
ABLE ACT
The Achieving a Better Life Experience Act (ABLE) of 2011 was reintroduced in the U.S. Senate and House on November 15. The ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary's employment, and other sources.
The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.
ACTION REQUIRED:
We need your help! We need you to call your two Senators and Representative. Click here and input your zip code for your Members and ask them to be an original cosponsor of the ABLE Act of 2011.
We've included a call script and all the information you need to make your phone calls.
**Note: Double check to see if your two Senators and Representative signed onto the bill in the last Congress (see below)
Please click here to Take Action Now.
NEW PRENATAL TEST FOR DOWN SYNDROME
October 17th, new non-invasive prenatal testing for Down syndrome was launched by the company Sequenom.
DSAGSL HOLIDAY PARTY!
This is a fun event for all ages- and the whole family! Don't miss out on the holiday bash of the year! Please RSVP by December 1 here or call the office at 314/961.2504. Hope to see you all there!
Thursday, November 10, 2011
SPECIAL OLYMPICS YOUNG ATHLETE PROGRAM FIELD DAY!
Young Athletes Field Day
Join us for a day full of fun!
Young Athletes is an innovative program from Special Olympics that introduces children with intellectual disabilities, ages 2 ½ to 7, to the world of sports! At this field day, your child will rotate through stations to practice motor skills including walking, running, balance, jumping, throwing catching and more!
Date: November 19th, 2011
Time: 3:00pm-5:30pm
Pizza dinner will be provided
For: Individuals 21/2-7 years old.
Family members are welcome to stay, participate and cheer on athletes!
Place: Four Rivers Area Family YMCA
Washington, Missouri
Hope to see you there!
Wednesday, November 9, 2011
ANNUAL CHRISTMAS PARTY
Does anyone have any ideas for the Annual Christmas Party this year?
Let's come up with something super fun for the whole family!
Sunday, October 23, 2011
LIVE DISCUSSION MONDAY OCTOBER 24 - "Hearing/Audiologic Concerns & Down syndrome"
Presented by Children's Hospital in Boston
Down Syndrome Program
October 24th, Monday from 7:00pm - 8:30pm: Margaret Kenna, MD, MPH, FACS, FAAP and Lisa Walker, AuD, CCC-
A will present on
"Hearing/Audiologic Concerns and Down Syndrome"
All talks can be viewed online LIVE by logging in just prior to the start time.
This is the link to view LIVE talks: on.chbos.org/CrockerLecture
LInk to previous discussions:
You can also print out a Power Point Handout for each Presentation.
Monday, October 10, 2011
SPECIAL OLYMPICS YOUNG ATHLETE PROGRAM!
Calling all parents of 3-8 year olds!
The Young Athlete Special Olympics Program is coming to Franklin County! Alyssa Feulner, Special Olympics Missouri Associate Area Director, will be at Gateway on Oct. 26 @ 6:30 pm for an informational meeting with parents.
The Young Athlete Program is for children 3-8. This is a 6-8 week FREE program that would meet once a week for 1 - 1 1/2 hours. The program would introduce the world of sports! motor skills including: walking, running, balance, jumping, throwing, catching and more!
Please contact Shawn Sullentrup 636-744-3762 for more information!
We look forward to seeing you on Oct. 26th and please pass along this information to anyone you know that would be as excited as I am about this great program!
Wednesday, October 5, 2011
BALLOON RELEASE CELEBRATION!
Come and celebrate Down Syndrome Awareness Month!
Sunday October 23rd
@ Union City Park
(across from Swimming Pool)
2 pm
Bring the whole family! Aunts, Uncles, Grandmas, Grandpas!
We will be releasing yellow and blue balloons that have our hopes, wishes, quotes or whatever you want to write and attach to your balloon!
What a great time to get families together & what could more fabulous that a sky full of balloons to bring awareness!
So bring a snack!
There is a wonderful park for all the kids to play and picnic tables!
(Balloons & notecards will be provided.)
Monday, October 3, 2011
OCTOBER IS NATIONAL DOWN SYNDROME AWARENESS MONTH!
This is a great time for parents and family to share with others about Down syndrome!
I think most of us share everyday. We share the successes, milestones, not so perfect moments and above all we share the love we have for our kids!
Wednesday, September 21, 2011
Parenting Special Needs Magazine Oct Issue!
On the Parenting Special Needs site they also have some great printables on the right hand side.
Have a fabulous Wednesday!
Friday, September 9, 2011
NEW MONTHLY MEETING TIME!
NEW MONTHLY PARENT MEETING NIGHT!
WHEN: 4th Wednesday of every month!
WHERE: Gateway Center for the Arts
Elm Street Washington MO
TIME: 7 pm
The Franklin County DS Group is joining the
Special Needs Parent Group at Gateway!
So if you would like to come to the September Meeting it will be Sept. 28.
See you then!
Thursday, September 1, 2011
NO SEPTEMBER MONTHLY MEETING!
Hi families!
We will NOT be having a monthly meeting for September!
Stay tuned for another MOM'S NIGHT OUT coming up!
Monday, August 8, 2011
RECENT POLL SHOWS AMERICANS SUPPORT DOWN SYNDROME RESEARCH!
An excerpt from the Global Down Syndrome Foundation:
The recent telephone survey of 810 Americans, conducted by Kupersmit Research on behalf of the Global Down Syndrome Foundation, found strong backing for government programs that provide education and training for people with Down syndrome, support for their families, and research into the condition.
The poll demonstrates a disconnect between funding for people with Down syndrome, which has lagged over the last decade, and the widespread support for spending on the condition. "I am encouraged to learn from this poll that so many Americans join us as advocates of the Down syndrome community," says U.S. Congressman Pete Sessions (R-TX), who co-chairs the Congressional Down Syndrome Caucus. "With additional funding and research, we can continue to build on our quest to provide the resources individuals with Down syndrome need to achieve and reach their maximum potential.”
Down syndrome is the most frequent chromosomal disorder representing an estimated 400,000 Americans. However, federal research funding from the National Institutes of Health (NIH) for people with Down syndrome was a mere $22 million in 2010, representing 0.0007 of NIH’s annual $31 billion budget. Despite its frequency, Down syndrome research funding has dramatically shrunk, as a percentage of the total NIH budget since 2000. In some years Down syndrome had the largest decrease in funding of any single condition at the NIH.
Read the entire here
Thursday, August 4, 2011
21 ACT PACKAGE
21 Act Package
The 21 Act package was introduced on July 29th, 2011 in the US House of Representatives by Representatives and Congressional Down Syndrome Caucus Co-Chairs, Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), and Chris Van Hollen (D-MD). The 21 Act package includes two important pieces of legislation, the Trisomy 21 Research Resource Act of 2011 (HR 2696) and Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695).
The first bill, the Trisomy 21 Research Resource Act of 2011 (HR 2696), will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.
The second bill, the Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695), will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million to support the Centers of Excellence.
The creation of the six Down Syndrome Centers of Excellences would focus on integrating basic and translational research and move findings efficiently toward clinical applications in Down syndrome. Research conducted on Down syndrome may also have spinoffs that increase knowledge about other areas of research, diseases, and conditions. Through outreach and communication efforts, the Centers will inform researchers and the public of scientific advances and improvements in medical care.
For more information, please contact Sara Weir, Policy Advisor, NDSS at sweir@ndss.org.
History
The Children's Health Act of 2000 (Public Law 106–310) amended the Public Health Service Act and included a number of provisions that addressed the research and surveillance needs of many disabilities (e.g., autism, traumatic brain injury, Fragile X, juvenile diabetes, asthma, epilepsy). However, this landmark legislation did not address the significant research, surveillance, and clinical care needs of Down syndrome and thus has been an impediment to progress in the Down syndrome research community over the last decade. The 21 Act Package attempts to incorporate Down syndrome as an area of permissible research and surveillance at the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) and will foster a better understanding of Down syndrome.
Let our voices be heard!
NEW DOWN SYNDROME HEALTH GUIDELINES!
New Down Syndrome Health Guidelines link:
Click here.
(American Academy of Pediatrics)
This would be a great guide to print and add to your child's medical folder and make a copy for your child's pediatrician.
It's also really important for parents to be proactive when it comes to their child's health. Sometimes we assume that because the doctor is the doctor they know exactly what do to and when and while in a perfect world they should it's still a good idea to keep a copy of medical records, doctor appointments, specialists, surgery dates etc.
Use the guide to keep your child on track and you "in the know".
(Thank you to Ria & Adrienne)
"A DRUG FOR DOWN SYNDROME"
"A DRUG FOR DOWN SYNDROME"
To read the full article click here.
Excerpts from the NY Times Magazine article published July 29, 2011.
“There’s been a sea change in our ability to understand and treat Down syndrome,” Mobley says. “There’s just been an explosion of information. As recently as the year 2000, no drug company would possibly have thought about developing therapies for Down syndrome. I am now in contact with no less than four companies that are pursuing treatments.”
But Costa points to a falloff in the financing of Down-syndrome research since the prenatal tests have been in development. Although it’s difficult to compare the numbers, money from the National Institutes of Health dropped to $16 million in 2007 from $23 million in 2003, before creeping back up to $22 million in 2011. That’s far less than the $68 million slated for cystic fibrosis, which affects an estimated 30,000 people in the United States, at most one-tenth of the 300,000 to 400,000 people who have Down.“The geneticists expect Down syndrome to disappear,” Costa says, “so why fund treatments?”Alan Guttmacher, director of the National Institute of Child Health and Human Development, denies that this is the calculus used by his organization. Yet he offered no clear answer when I asked him why about $3,000 in research dollars is spent by N.I.H. for every person with cystic fibrosis, compared with less than $100 for every person with Down.“The number affected is a fair metric to use,” Guttmacher said. But, he pointed out, most of N.I.H.’s funding decisions are based on the strength of proposals coming from researchers. Advocacy groups for disorders like AIDS, autism and breast cancer have certainly played a role in their gaining increased funding, he said. And perhaps, he speculated, Down suffers from an image problem. “Part of it is that Down syndrome has been around for so long,” he said.
30,000 30,000 17,500 30,000 45,000 400,000 400,000 1.5K 400,000
Let's get the conversation started? How do you feel about this article?
One thing that always strikes me is how LITTLE research money Down syndrome receives from the National Institutes of Health.
There numbers are below...
There numbers are below...
Are we making our voices heard?
Is it a case of the "loudest one wins"?
What are your thoughts?
FRIENDLY REMINDER: NO PARENT GROUP TONIGHT!
Hi families!
We will NOT be having a monthly parent meeting tonight since Tuesday was the play date and next weekend is the FAMILY DAY: ICE CREAM SOCIAL!
Have a great weekend and see you all next Saturday!
Tuesday, August 2, 2011
TODAY'S PLAY DATE!
A big thank you to Michelle for hosting the play date today!
The kids were able to play inside and while the moms had a chance to sit back and visit!
And then an indoor picnic for lunch!
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