Tuesday, July 22, 2014

App: Gross Motor Skills for Children with Down Syndrome Mobile Companion

by Woodbine House:
This singularly unique app provides a mechanism by which parents and therapists of children with Down syndrome may catalog and track the progress a child is making in gaining the skills recommended in the 'Gross Motor Skills for Children with Down syndrome' book, authored by Patricia Winders.

As parents and therapists of children with Down syndrome, we understand that the pace at which they grow, learn, and develop varies greatly from that of typical children. Indeed, even within the Down syndrome population each child learns at their own unique pace. Personality, capability, motivation, health, and environment all cause us to adapt our thinking and techniques for caring for these wonderful children. As such, typical "Baby Trackers" and "Milestone Loggers" are often far too rigid and quickly fail to be flexible enough to accommodate the unique challenges presented to parents of special needs children. For example, typical trackers provide early development milestones and suggestions that quickly fall short of the "extra mile" we must go as care givers to ensure our children will achieve their highest potential.

Monday, July 21, 2014

Achieving a Better Life Exeperience (ABLE) Advances in the 113th Congress

from the NDSS and Digital Journal:
Subcommittee on taxation and IRS Oversight of the US Senate Committe on Finance Will Convene a Congressional Hearing on NDSS' Top Legislative Priority, #PasstheABLEact, and NDSS Board Member Sara Wolff Set to Testify
WASHINGTON, July 21, 2014 /PRNewswire/ -- Sara Wolff, a board member and self-advocate from the National Down Syndrome Society (NDSS), will testify before the Subcommittee on Taxation and IRS Oversight of the US Senate Committee on Finance on the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647). The hearing, "Saving for an Uncertain Future: How the ABLE Act can Help People with Disabilities and their Families", will take place on Wednesday, July 23, 2014, at 10 a.m., in 215 Dirksen Senate Office Building.
Wolff is a 31-year-old young woman with Down syndrome from Moscow, Pennsylvania, and has been a board member of NDSS since 2007. Earlier this year, Wolff authored a change.org petition calling on members of Congress to pass the ABLE Act in the 113th Congress. Wolff's petition has earned the support of over 250,000 people around the country.
In addition to Wolff, the Congressional panel will also include Congresswoman Cathy McMorris Rodgers, Member of Congress (R-Washington), U.S. House of Representatives, Spokane, Washington and mother to Cole, who happens to have Down syndrome; Robert D'Amelio, Parent and Advocate, Autism Speaks, Charlotte, North Carolina; and Chase Alston Phillips, Financial Advisor, Alexandria, Virginia.
"Just because I have Down syndrome, that shouldn't hold me back from achieving my full potential in life," Sara Wolff said. "I can work a full-time job, be a productive member of society, and pay taxes – but because of these outdated laws placed on individuals with disabilities, we hold people like me back in life. It's time that Congress act and pass the ABLE Act."

Thursday, July 17, 2014

Tim McGraw Serenades Young Fan at Atlanta Concert

by Kay West from People:
Country music superstar Tim McGraw puts on a really big show, but it was an intimate one-on-one serenade to an enchanted young girl that brought the packed house down at Aaron’s Amphitheater in Atlanta Sunday night.
While performing "You Are So Beautiful" for wife Faith and his three daughters, he spotted the enraptured fan in the front of the crowd, mouthing the words to the classic love song, and invited her to join him on stage.
As cameras captured the moment, they sat side by side and finished the tune together. After sharing a big hug, the singer, who clearly knows the way to a woman’s heart, signed his guitar and presented it to the girl – much to the delight of the entire audience.

Monday, July 14, 2014

Down Syndrome Convention Showcases Jason Crabb’s “Love Is Stronger” Video

By Jamie Ward from Music News Nashville:
The emotional and heart-touching video to Grammy winner Jason Crabb’s latest hit, “Love Is Stronger,” is set to be showcased today during the National Down Syndrome Congress Convention as the star of the video, Ashley DeRamus (Ashley DeRamus Foundation), makes a special guest appearance. The advocate for Down Syndrome will appear at the convention as her work is highlighted during the 42nd Annual Event held in Indianapolis, IN.
The video, directed by multiple award winner Roman White (Justin Bieber, Taylor Swift, Carrie Underwood), will be shown to all the delegates from around the globe attending the conference.
The video has impacted the hearts and lives of countless individuals since it’s debut on USAtoday.com. The track was produced by Jay DeMarcus (Rascal Flatts) and has enjoyed success on country and christian radio.
Through the experience of living with Down syndrome, Ashley DeRamus’ advocacy proves that those born with Down syndrome have ability and not disability. Ashley has been featured as a speaker at the United Nations and was named one of the six most inspirational entrepreneurs with Down syndrome in the world by Disney. Ashley, along with her mother Connie DeRamus, launched a clothing line tailored to fit women with Down syndrome, Ashley by Design. Ashley resides in the Birmingham, AL area.
Jason Crabb is one busy man. Currently on the summer leg of his “Love Is Stronger’ Tour sponsored by Feed the Children and presented by Muse Concerts, the highly-celebrated individual shows no signs of slowing down. Last week, Billboard magazine broke the news that Crabb entered into an agreement with Reunion Records, a division of Provident Music / Sony, home to Brandon Heath, Casting Crowns, Steven Curtis Chapman, among others.
“Love Is Stronger” on YouTube:

Sunday, July 13, 2014

Arizona family travels to Michigan to help another family whose daughter is battling cancer

by Kim Russell from WXYZ ABC 7:
WARREN, Mich. (WXYZ) - A family from Arizona stopped in at a Warren home today to do yard work. The reason?  They know a little girl who lives there is fighting cancer.
Lexi Spencer, 11, has Down Syndrome and is halfway through an expected 30 month treatment for cancer.
The Murset Family wanted to make it easier for Christine and Jim Spencer to focus on their daughter, without having to worry about chores outside the house. Gregg Murset, his wife, and six children cleaned windows, weeded, trimmed trees, and did other chores today.
Gregg says he is trying to practice what he preaches. He runs a website, myjobchart.com .  It helps kids keep track of their chores and good deed through an app.
Kids can then earn an allowance, buy items, or donate money to charities.
"This is an outgrowth of what myjobchart is," said Murset. "It is teaching kids responsibility, work ethic, and giving back."
The Spencer family isn't the only family benefiting. The Mursets are traveling more than 6,000 miles this summer helping families.
"I don't think anybody has done this before," said Syndney Murset, 13. "It is fun to help people and see what their reactions are. "
For Lexi's parents seeing the get done, is a weight off their shoulders.
"I can't tell you how heartwarming it is for people to come from so far and do things we have wanted to do. I mean, our windows, they haven't been washed in 2 years," said Christine Spencer. 

Saturday, July 12, 2014

Friday, July 11, 2014

NDSC Convention Quick Reference for Saturday 7/12

NDSC Convention Schedule for Saturday 7/12 (subject to change).

7:30am-3pm Registration Open
7:30am-12:30pm Kids Camp Session 3
8am-6pm Exhibits Open
8am-5:15pm Youth & Adult Conference (break for 12-1:30pm)
8am-5:15pm Brothers & Sisters Get Acquainted (lunch included)
8:30am-10am Workshops
10:30am-12pm Workshops
12pm-1:30pm Lunch on your own
3pm-8pm Kids Camp Session 4
1:30pm-3pm General Session
3:30pm-5pm Workshops
5:30pm-6pm NDSC Membership Meeting
6:30pm-7pm Reception and Cash Bar
7pm-9pm Banquet (by ticket only)
9pm-11pm Dance (open to all)

Thursday, July 10, 2014

NDSC Convention Quick Reference for Friday 7/11

NDSC Convention Schedule for Friday 7/11 (subject to change).

7am-7pm Registration Open
7:30am-12:30pm Kids Camp Session 1
8am-12:30pm Pre-Conference Sessions
9am-12pm &1-2:30pm Friendship Club Open House
10am-8pm Exhibits Open
1pm-2:30pm MFDSN Lunch N Learn
1:30-2:45pm Sharing Sessions
3pm-8pm Kids Camp Session 2
3:15pm-5:15pm Youth & Adult Kick Off Party
3:15pm-5:15pm Brothers & Sisters Get Acquainted
3:30pm-5pm Workshops
6:30pm-7:45pm Opening Session
8pm-10pm Opening Session & 321 Dance!

Wednesday, July 9, 2014

NDSC Convention Quick Reference for Thursday 7/10

This is a quick reference to help NDSC Conference attendees for Thursday's activities (subject to change).

Thursday 7/10/2014

5-9pm Exhibits Open
6-9pm Registration Open
7-8:30pm First Time Attendee Orientation
7-8:30pm International Exchange
7-8:30pm Adult Sibling Reception

Bookmark DSD for daily updates about the NDSC Convention!

Tuesday, July 8, 2014

MMA Fighter With Down Syndrome Takes Fight to Court

by Christina Hernandez from NBC Miami:
A 24-year-old MMA fighter with Down Syndrome is taking his fight to court after the Florida Boxing Commission said he can't compete in a sanctioned fight.
While the boxing commission says Garrett Holeve can train and take part in exhibitions, where there is no score kept, it will not allow the Cooper City fighter to take part in an actual competition.
"He didn't understand why he's not allowed to compete," said his father, Mitchell Holeve. "He understands he has Down syndrome, but he doesn't feel like it's stopped him from competing, and yeah, he was very depressed."
He said when his son got the news in August, he was so upset that it took him weeks to get back to the gym.
"I was disappointed," Garrett Holeve said. "I was crying."
Mitchell Holeve said his son has lived his entire life without letting Down Syndrome get in the way, training like any other MMA fighter.
"People see his work ethic and they see how much he wants it and that kind of attracts them to him," he said. "They respect the effort that he puts in."
The fighter has even found an equally-matched opponent to go up against -- Special Olympian David Stephen from Nebraska who has monoplegic cerebral palsy.
Now, the Holeves said they are prepared to take the fight to court, by suing the Florida Boxing Commission to court for discrimination.
"He's trained like any other MMA fighter is trained," attorney Amanda Heystek said. "Garrett is trained to compete."
Calls from NBC 6 to the Florida Boxing Commission were not returned.