The simplest way to raise awareness about Down syndrome this holiday season

by Mark Leach from Down Syndrome Prenatal Testing:
In 2007, I attended my first ever National Down Syndrome Congress conference. Campbell Brasington, a genetic counselor from Charlotte, North Carolina, shared the simplest way to raise awareness about Down syndrome and engage in medical outreach. 
This is the time of year when many of us will be mailing out Christmas/Holiday/End-of-Year cards to our friends and family. Typically, these annual missives will include a photo of the family and, for some, a written update on the family’s activities. Brasington made the following simple suggestion for families to raise awareness about Down syndrome:

Include your obstetrician on your holiday card mailing list.

She explained that for many OBs, their experience with individuals with Down syndrome is the relatively brief moment of when they deliver a child with Down syndrome. If you have a child with Down syndrome, you can show how this child your OB delivered is growing up and what your child is doing. You can provide your OB a glimpse of what a life with Down syndrome can be like.
This simple tip isn’t limited just to OBs, but it would be good to at least start there. Parents could also consider adding the labor and delivery department of the hospital where their child was born, as well as the medical professionals who provided prenatal care, like genetic counselors, geneticists, and maternal-fetal medicine specialists.
This year, a group of active moms launched a social media campaign to encourage families to follow this simple awareness raising tip. I have graciously been credited with this idea, but Campbell Brasington is who deserves the recognition as the originator of this great, easy idea.
And, also, this year, Lettercase, the publisher of materials through the National Center for Prenatal & Postnatal Down Syndrome Resources (where I serve as the bioethics specialist), is offering a great deal:

This year, please consider sending a Holiday card to your medical provider that includes a photo of your loved one with Down syndrome. From #GivingTuesday to Friday, December 6, anyone who makes a $15 donation to the National Center for Prenatal and Postnatal Down Syndrome Resources will receive a Medical Provider Holiday Gift Pack that includes “Understanding a Down Syndrome Diagnosis,” “Delivering a Down Syndrome Diagnosis,” our new testing pamphlet, and 5 National Center postcards.

If you missed it, today is the last day for this great deal. This gift pack is for anyone who cares about their local obstetricians having the medically-reviewed and recommended materials to be provided patients receiving a prenatal test result for Down syndrome. You can make a $15 donation to the National Center to get this gift pack at this link.
If you have a loved one with Down syndrome, I hope you will follow through with this simple tip of including your OB on your family’s holiday card list. If families did this each year, it would provide examples of what a life with Down syndrome can be like for the OB and other health care providers to share with their patients when they first deliver the diagnosis. Who knows: your family’s photo may be the one shown to a new or expectant mom to say, “well, this is how one of the families whose child I delivered is doing.”

Fraternity sponsors annual charity Christmas concert

by Clayton Leuba from the Utah Statesman:

Starry Night, a benefit concert presented by USU’s Alpha Tau Omega fraternity, will return to campus for its second year on Friday.

Featuring Christmas music in a variety of musical styles, the proceeds from the event will be donated to Racing for Orphans with Down Syndrome, a local nonprofit organization which aims to raise money to aid in the adoption of children who have Down syndrome.

“We hope this can be something people can come to to take a break from the hustle and bustle and spending of the holiday season to come out, listen to some good music and really remember what Christmas is all about,” said Joe Hill, the vice president of Alpha Tau Omega and the event chairman for Starry Night.

Last year’s concert, which Hill said raised $300 in donations for the Sub For Santa program despite not being a sanctioned fundraising event, lead Hill to the idea of using the concert as a philanthropic opportunity.

Tickets for the event, which requires semiformal attire for entry, are $7. Hill said Alpha Tau Omega hopes to raise more than $2,000 for RODS through the event, which will begin at 7 p.m. in USU’s Performance Hall.

Another reason I love Darius Rucker...

by Carol Hughes from KFDI FM 101.3:

I love him because of his big heart!
He totally surprised this boy who has Down Syndrome when he performed his song during a talent show.
Here's what The Boot had to say about the surprise:

"It was already a good night for 16-year-old Frankie Antonelli when he took the stage of his high school talent show to cheers from the audience. But his night was about to get a lot better — Darius Rucker was planning to join the teen, who has Down syndrome, on stage.

Antonelli’s friends and family can be heard cheering the teen on as he performs Rucker’s hit ‘We Still Got Time.’ The cheers get louder at the 3:10 mark in the video above, when Rucker appears on stage with Antonelli and shows that even though he is a huge country star, he has managed to stay down to earth.

Rucker and Antonelli finished the song next to one another, with Rucker’s arm around Antonelli’s shoulders, and the duo ended the song with a hug on the stage of Wando High School in Rucker’s native South Carolina.

Today is Giving Tuesday

	Today is #GivingTuesday, a campaign to create a national day of giving at the start of the annual holiday season. It celebrates and encourages charitable activities that support non-profit organizations.  Read more about it here.  Last year on #GivingTuesday, NDSS donors represented 20 different states.  Endorsements from people all over the community made a huge impact on the number of donations we received and the amount of people that were “talking” about NDSS on a variety of social media channels. Lots of our celebrity ambassadors joined in too, many of whom have agreed to help us again.  Today, our goal is to raise $5,000 and encourage 10,000 individual social media users to engage with NDSS in connection with #GivingTuesday.  We can do this! If you’d like to join us in the endorsement of NDSS and support a worldwide day of giving back, please share our posts and tweet and chat on our behalf.  Please include @NDSS and #GivingTuesday so we can track your communication. Here are some sample tweets you can use today.  ----Support @NDSS and people with Down syndrome by donating $21 today! ndss.kintera.org/GivingTuesday #GivingTuesday ----Promote the value, acceptance and inclusion of people with #Downsyndrome this #GivingTuesday. Donate $21 to @NDSS! ndss.kintera.org/GivingTuesday ----Donate $21 to @NDSS in honor of those with an extra 21st chromosome today for #GivingTuesday! ndss.kintera.org/GivingTuesday #Downsyndrome ----After #BlackFriday and #CyberMonday donate $21 to @NDSS for #GivingTuesday and honor those with an extra chromosome 21! ndss.kintera.org/GivingTuesday ----Tis the season of giving! Support @NDSS, one of my favorite charities, in honor of #GivingTuesday by donating $21! ndss.kintera.org/GivingTuesday If you’d like to make a donation and help us reach our goal, please click here. If you’d like to stay connected to NDSS in real time, please follow us on one or all of these social media channels: NDSS on Facebook NDSS on Twitter NDSS on Pinterest NDSS on YouTube NDSS Buddy Walk® on Facebook NDSS Buddy Walk® on Twitter With many thanks this holiday season, Your Friends at NDSS

Parents of children with Down syndrome mentor other parents

by Karen Garloch from The Charlotte Observer and Centre Daily Times:
About two hours after Melissa Thomason gave birth to her son Welles, she and her husband learned their baby had the chromosomal abnormality known as Down syndrome.
"I remember sitting in the hospital room and having a lot of uncertainty about what that diagnosis meant for us, what it meant for him." She wished she could talk to someone who'd had the same experience.
So when the Down Syndrome Association of Greater Charlotte (N.C.) recruited parents to become mentors for new parents of babies with Down syndrome, Thomason was among the first to sign up. "I felt like I needed to be that person for someone else."Through the "First Call" program, Thomason, 32, of Harrisburg, N.C., has been matched with two other families who learned of their babies' Down syndrome through prenatal genetic testing.
Both couples had chosen to continue their pregnancies before they met Thomason, but she wouldn't have been surprised if they had considered abortion. If she had known in advance, Thomason said, "I would have had serious questions about whether I wanted to continue the pregnancy or not.
"Today though, Welles is 11 months old, and Thomason feels differently."

Football Team Honors Player With Down Syndrome

Nathan Hershey is at every practice, every game and has even earned the nickname "coach" during his four years at his high ...

school. So, his coach decided to end the season with a special surprise.

Nicole Scherzinger wants to adopt child with Down syndrome

from Business Standard:
Nicole Scherzinger has said that she has wondered if God would bless her with a child with Down's syndrome and if that doesn't happen then she is considering adopting one.
The former Pussycat Doll, who became a Special Olympics ambassador because she grew up with an aunt who has the disability, said that her aunt is a positive influence and inspiration for her, Metro.co.uk reported.
The former girlfriend of Formula 1 ace Lewis Hamilton said that people get caught up in everyday little problems and in their own vanity, but her aunt Keziah Frederick is always happy and ready to give people love and hug no matter what.
Scherzinger said that her aunt is a big walking ball of love and has opened up her eyes and her heart to these special people like her.

ABLE Act Gets Majority Support

from the Autism Policy Blog by Pitney:

The ABLE Act (HR.647 and S.313) yesterday had majority support in both chambers as the 51st senator became cosponsor (counting prime sponsor Robert Casey (D-PA)). As of this morning, it had 310 in the House (including prime sponsor Ander Crenshaw R-FL)). A number of lawmakers agreed to cosponsor when they met with advocates during last week's Autism Speaks to Washington summit. Autism Speaks provides the full list here.

The Arc explains the bill:

Many families have been searching for a way to plan for the future of a child with severe disabilities. While they are able to save for the educational needs of their other children through “529” college tuition plans, they find those plans do not fit the needs of their child with severe disabilities, since their children may now, or in adulthood, need the long term services and supports of the Medicaid program and the income assistance of the Supplemental Security Income (SSI) program. Some families have found it too expensive to establish a trust which meets the requirements of the Medicaid and SSI programs, yet they recognize that their loved ones may live for many decades beyond the ability of the parents to supplement the services they receive through Medicaid. Others want to ensure the financial security of family members who have the level of disability required for Medicaid eligibility, but for now, are managing to function without the use of those benefits. Still others want to ensure that their family member can exercise control over the funds in the account without endangering the Medicaid and SSI benefits on which they may rely. The ABLE Act (S.313 / H.R.647) would give individuals with disabilities and their families access to accounts that would allow individual choice and control while protecting eligibility for Medicaid, SSI, and other important federal benefits for people with disabilities.

From a Crenshaw press release:

Congressman Ander Crenshaw (R-FL), chairman of the Financial Services and General Government Appropriations Subcommittee, stated, “Support for tax-free savings accounts for individuals with disabilities stands at its highest level ever - testament to the tireless dedication of those who believe that ALL Americans deserve equality when it comes to financial planning tools. It’s time to pass this legislation and create a brighter future for those in need. ”

Senator Robert Casey (D-PA) stated, “The ABLE Act is commonsense bipartisan legislation that will help make it easier for those families to save for their children’s future care, and we should pass it immediately. Individuals with disabilities and their families face challenges many of us can’t even begin to imagine.

OKC center fined after trying to expel child with Down Syndrome

from KFOR 4 Oklahoma City:
OKLAHOMA CITY -  An agreement has been reached between the Justice Department and a child development center in Oklahoma City after the center discriminated against a child with Down Syndrome.
The Justice Department says Camelot Child Development Center of Oklahoma City and Edmond violated the Americans with Disabilities Act.
Authorities claim the center prohibited a child with Down Syndrome to go on field trips and threatened to expel her because of her developmental delays.
Also, the girl is not fully toilet-trained and requires help with her diaper.
Officials say that while Camelot helps younger children, workers refused to provide that kind of assistance to the girl during field trips.
Authorities say that is a direct violation of the ADA, which prohibits discrimination on the basis of disability in child care centers.
“Children are our most valuable resource and must be afforded equal opportunities to grow, learn, and develop,” said U.S. Attorney Sanford C. Coats.  “The Americans with Disabilities Act ensures that a child with a disability has the same access to those opportunities as a child who is not disabled.”
The Justice Department says Camelot worked closely with them through the investigation to change its policies.
Under the new agreement, Camelot will pay $3,000 to the family and provide one full year of child care services free of charge.
Camelot will also train its staff on the new anti-discrimination policy and will be monitored by the Justice Department for three years.
 

Culinary inspiration from chefs with Down Syndrome

by Beatrice Credi from West:
ChefDown is the first web channel that broadcasts cooking programmes presented by chefs with Down’s Syndrome preparing tasty dishes from around the world. Launched in Spain as a collaboration between Eroski and Down España, the web channel has an accessible video menu in which people with intellectual disabilities give step-by-step guides to making various recipes. Armed with aprons, scales and all the tools of the culinary trade, the presenters give tips on how to eat healthily and get a balanced diet – all done in a simple and entertaining style. The initiative has a dual objective: on the one hand it aims to encourage independence and to involve young people to take part in a group activity, seeing as they can then present their own recipes, broadcast them and share them with the ChefDown community. On the other hand, it also seeks to improve the eating habits of people with Down’s Syndrome, a demographic with high rates of obesity and celiac disease. ChefDown even allows users to plan their own weekly menu.