2014 TWENTYWONDER to Benefit Down Syndrome Association of Los Angeles, 6/28

from Broadway World:
Down Syndrome Association of Los Angeles (DSALA) announced today, in celebration of World Down Syndrome Day, that their annual benefit TWENTYWONDER, A Carnival of the Mind, will have its 5th Anniversary on Saturday, June 28, 2014 beginning at 6:00 p.m.
This year's TWENTYWONDER, marks the 4th year, that the L.A. Derby Dolls will host the critically-acclaimed, 21 and older fundraising event, at the Doll Factory (1910 West Temple Street) in Los Angeles. The evening will feature an all-star roller derby bout, music, comedy, art, sciences and plenty of last minute guest surprises. Proceeds will benefit DSALA's efforts to support those born with Trisomy 21/Down syndrome living in greater Los Angeles.
"WOW...I can hardly believe we are about to mount the 5th Annual TWENTYWONDER in Los Angeles! From it's funky/sweaty/adorable beginnings as SuperBall 'The One Day World's Fair' in 1996 to the fun-loving genre bending acceptance/awareness event hailed as today's Carnival of The Mind, this event is a genuine pleaser. TWENTYWONDER repeatedly draws and amazes the sweetest people of Los Angeles with a cultural cocktail shaken with the sights and sounds and ideas for our thirsty modern lives," said Jim Hodgson, Director of Down Syndrome Association of Los Angeles.

50 Countries Unite To Fight Medical Discrimination Against People With Down Syndrome

by Eleanor Goldberg from the Huffington Post:
3/21 marks World Down Syndrome Day, giving advocates the opportunity to celebrate the lives of people with the condition, and also to push for equal treatment in every area of life.
This year, the awareness campaign is focusing its efforts on urging countries worldwide to provide adequate health care to people with Down syndrome.
People with Down syndrome typically have an increased risk for some medical conditions, including congenital heart defects, respiratory and hearing problems and Alzheimer's disease, according to the National Down Syndrome Society. While many of these conditions are treatable, and people with Down syndrome can live long and healthy lives, they still face elements of discrimination that interfere with their treatment.
According to Down Syndrome International, people with Down syndrome are often denied or delayed access to health care. They sometimes receive incorrect diagnoses due to their physician’s lack of knowledge or inadequate training, and are often excluded from the treatment plan process and making medical decisions.

Dallas Filmmaker Chris Dowling on Accidentally Writing a Movie About Down Syndrome

by Lauren Smart from The Dallas Observer The Mixmaster:
When Chris Dowling began writing his film Produce, he didn't know he was writing a film about down syndrome.
"I wanted to write a story about faith," he says. "And then as I was working on the film's narrative, I realized there had to be a character with this childlike faith and so I ended up writing a young man with down syndrome."
When I speak with Dowling, the Dallas native is rushing to get through the final stages of production on his second full-length film, which premieres at the Dallas International Film Festival at 5:45 p.m. Sunday, April 6 with a repeat screening Monday, April 7 at 1 p.m.
The movie follows Calvin, a professional baseball player forced into an early retirement in Kentucky, where he struggles to raise a teenage daughter. Like most films about washed-up sports players, Calvin hits rock bottom, which is when he meets a kid with Down syndrome nicknamed Produce, because he works at the local grocery store. The rest of the film, predictably, is about Calvin's redemption. What's not predictable about this film is that in role of Produce, Dowling chose to cast an actor with Down syndrome.
"Usually filmmakers cast someone to play Down syndrome, but as I began to research the disability, I didn't want to do the story an injustice. I didn't want it to feel contrived," Dowling says. "It might be the most lines an actor with Down syndrome has ever had in a film, but the only limitation that people with Down syndrome have are the ones we put on them."

People with Down syndrome are not costs to be avoided through prenatal testing

by Mark Leach from Down Syndrome Prenatal Testing:

I shouldn’t even have to say this.

The dinner
At last week’s American College of Medical Genetics & Genomics (ACMG) annual meeting, I was invited to attend a dinner hosted by one of the Non-Invasive Prenatal Screening (NIPS) laboratories. I was surprised to be on the guest list, and looked forward to enjoying a steak.
The room was packed–a far larger gathering than I was expecting. The other attendees were typical of those attending the ACMG meeting: medical geneticists, genetic counselors, and industry representatives.
The host company presented on their latest research. On how more conditions beyond aneuploidies may be added to the panel of conditions screened for and how a recent study suggested applying NIPS beyond high risk moms. It was what I expected, as far as the presentation went. Unfortunately, so was one of the last questions asked during Q&A.

The question
An attendee raised her hand and asked whether, given the higher cost of NIPS as compared to traditional screening, had the company shown that its test was “cost-effective.”
I saw red.
If you’re not familiar with that phrase, typically “cost-effective,” when associated with prenatal testing, means this:

• Are the costs of offering NIPS to the 99+% of pregnant women not carrying a child with Down syndrome off-set by the number of those Down syndrome pregnancies that are identified … and aborted.

This is how the math is done: NIPS testing costs over $1,000 per test for all but one of the laboratories. Various studies have estimated that a life with Down syndrome costs a certain amount more to the healthcare system–the most recent number I saw was $350,000. So, a prenatal screen is “cost-effective” if 348 mothers not carrying a child with Down syndrome accept the test, costing $348,000, but the one pregnancy actually with a child with Down syndrome is identified and “avoided,” “prevented,” aborted.
Sitting there as undoubtedly the only attendee who had a child with Down syndrome, I felt my chest tighten.

321edcuate! Give & Get Back fundraiser from 321foundation!

EXCITING NEWS TO SHARE
The 321foundation is starting a fundraising campaign TODAY...321educate! ANYONE can set up a “team” online and start raising funds…or you can find your favorite team and donate today! The money you raise will go back to help empower individuals with Down syndrome and other intellectual disabilities through educational seminars, social events and advocacy efforts.

WHY RAISE MONEY AS A TEAM FOR 321FOUNDATION? It’s simple. It’s good to GIVE. Good karma just feels good…and...you will also GET BACK in return. Not only will you feel good for giving, but you will earn prizes for giving, too. It’s a win-win!

FUNDRAISING TIERS FOR “TEAMS”$250…..321foundation tshirt
$500…..321foundation hoodie (and the first prize)
$1k…....original artwork by an individual with DS (and the first 2 prizes)
$2,500…$100 iTunes gift card (and the first 3 prizes)
$5k…….32GB iPad (and the first 4 prizes)
$7,500…$500 scholarship* (and the first 5 prizes)
$10k……$1,000 scholarship* (and the first 6 prizes)
*Scholarship/convention must be approved by the 321foundation board.

Our goal is to get an iPad and educational scholarship in the hands of as many individuals with Down syndrome or other intellectual disabilities as possible...but your team does not have to be created for an individual with a disability. You may also gift your prizes in your name to individuals that could greatly benefit from them. This fundraiser is not tied to any geographic location so whether you live in Delaware or South Dakota, you can establish a team and fundraise. Give and Get Back.

To set up your “team” go to www.fundly.com/321educate and follow these easy steps…1. Scroll down on the right hand side of the page and click on “become a fundraiser”
2. At the bottom of the popup screen, click on “fundraise with an email”
3. Personalize with your info (the name you enter will be your fundraising name)
4. You will be redirected to a new screen which will allow you to personalize your fundraising page.
5. Share with your friends and start fundraising! It’s that simple!

Donations may also be directed via mail to:
321foundation
PO Box 1128
Bear, DE 19701
Please be sure checks have your team/name listed in the note section.

This fundraising campaign will be open through midnight EST May 31, 2014. Donations will be accepted after that date but will not be prize eligible. Prizes will be mailed by July 1, 2014.