One morning a month! Down Syndrome Center at Children's Hospital

by DSAGSL from volunteermatch.org:

Do you have one Tuesday morning a month to spare? Consider volunteering at the Down Syndrome Center at St. Louis Children's Hospital! We are in need of volunteers to give their time on the last Tuesday of every month to help support families who have a child with Down syndrome.
As a Down Syndrome Center volunteer, you will collect and/or update the family's information for the Down Syndrome Association of Greater St. Louis. You will also inform families about the DSAGSL- who we are and the support programs we offer such as family events, educational conferences, local community groups, newsletters, a library, and more. You'll answer any questions they have as best you can- but we don't expect you to know everything!
This opportunity is great for retirees looking to give their time! Having a connection to Down syndrome (relative, friend, former professional, etc.) is preferred but not necessarily required. Volunteers will undergo training through the Children's Hospital and a blood test and TB test.
We would like people to commit a minimum of 6 months to the Down Syndrome Center, but preferably longer if you are able. Due to this commitment, we discourage students from this opportunity.
If you would like more information about this opportunity, please email abby@dsagsl.org or call 314-961-2504 ext. 101

Shane and Wyatt Down Syndrome Foundation

from the Waksmunski family:

The Shane and Wyatt Down Syndrome Foundation (SWDSF) is now open for business.  This Foundation will have two primary points of focus.  The first will be to recognize those in our schools and communities that are making a difference in the everyday lives of those with Down syndrome or special needs.  The second will be to assist individuals or families, who may not always ask, but who could use  a helping hand.

First, I spend a lot of time advocating for my sons and educating those who may not know of the challenges, struggles, joys and success of having a child (or twins) with Down syndrome or special needs.  With this in mind, SWDSF will establish a scholarship program for high school seniors to be used to continue their education after High School.  This award will go to a senior who has shown leadership while advocating, fundraising or volunteering to help and assist those with special needs.  I hope to establish at least two scholarships in two different High Schools for the class of 2013.  SWDSF will also establish a community award that will go to an individual with Down syndrome or to a sibling of an individual with Down syndrome who has made a significant contribution to the Down syndrome community.  For this award, since I will come out to meet the person and conduct the presentation, we will initially limit this to those living in the Northeastern United States.  I hope one day to be traveling the country delivering this award.  My hope is that nominations would come from the nominee’s friends, family or local Down syndrome group.  This is an opportunity to work together and say thanks to those who are making a difference.

Secondly, SWDSF will establish a program to assist individuals and families in purchasing learning tools, iPads or supplies that will positively impact a person’s life so that this person may reach their full potential as a person.  SWDSF has already secured donations to purchase an iPad that will be delivered next month to a family in PA.  This family also has twin boys with Ds, are non-verbal and have autism.  After notifying their Mom this past weekend and after a few back and forth emails, this was the last email from her that I received:  “Thank you!!!!!!!!!!! And I KNOW this will help the boys unlock what's inside their smart little heads”  I hope so!!  This is why this program is so important.  Hopefully, we will be able to assist many more families as well.

This Foundation will only work and be successful if we all get involved.  SWDSF will need financial assistance and with your help and through your donations along with fundraising activities, we can make this possible.  I realize that there are many family obligations, financial stresses, other charities and such, but I know we can make a difference and we will, one family at a time.  Also, my goal was not to rival other local Down syndrome groups or organizations to but work with them to recognize those who are making a significant contribution and to develop a program to assist families.

We are planning a Fundraising Dinner / Dance for later this year, more information to follow on this event.  If you are interested in sponsoring an event or hosting a fundraiser, please reach out to me so that we can discuss this in more detail.

I hope you find what we are doing valuable and beneficial.  Please consider making a donation so that we can really hit the ground running.  Every donation is important, with no amount being to small.

I am so excited and I know together we can make a difference.  The first iPad is being delivered next month and the first community award will be presented shortly as well.  This is just the beginning!!

Please send donations to:

Shane and Wyatt Down Syndrome Foundation

PO Box 214

Lehighton, PA  18235

My email address is ericwaxy@ptd.net  

Again, THANK YOU!!

Shane and Wyatt Down Syndrome Foundation 

the heart pillow project

from Standard Examiner by Rachel J. Trotter:

Love was in the air as students from Weber State University and Ogden High School worked with members of the Morgan/Weber Down Syndrome Foundation to tie heart pillows for the cardiac unit at McKay-Dee Hospital.

The heart pillow project is in its third year. In the past, Scouts have worked with the foundation to create the pillows, but this year WSU student Kaitlyn East worked with students in her small group communication class as well as students in Youthlink, a youth service group. They tied and assembled approximately 140 small heart pillows for patients recovering from heart surgery.

The project not only helps those recovering patients but gives those with special needs the chance to do a little service as well.

“It’s been awesome because so often they have the focus on them and now they get to focus on someone else,” East said of the Down syndrome members.

East was excited about the project when she heard about it because she felt like it helped her community. She said that many Down syndrome individuals can suffer from heart ailments so the pillow project can hit close to home for them.

East and some of her classmates spent about a week cutting the fabric for the pillows so it would be easy to assemble last Friday night.

East’s classmates were glad to pitch in on the project.

“It’s pretty cool and it’s always good to help out other people,” WSU student Frank Otis said as he tied together a fleece heart pillow. He smiled as he watched some of the Down syndrome kids play with some of the pillows that had been tied.

“He’s having a great time,” he said, looking at one of the kids.

Susan McQuivey brings her daughter, who has Down syndrome, to the event each year.

McQuivey’s husband had cancer and often used pillows during his hospital stay for a comfort.

“We don’t like to miss things like this,” she said as she worked with her daughter to tie the pillows.

She also enjoys the time to be around other parents of children with Down syndrome.

“We can all relate and our kids can connect with each other,” she said.

The Weber/Morgan group usually meets once a quarter and she always tries to come. Her daughter is grown and she has noticed it provides support if she shares some of her experiences with the parents of younger children with Down syndrome.

The group had an assembly line going, tying each pillow, then attaching a small card with a picture of one of the members and the saying, “From our hearts to yours.”

Noelle Shaw works for the McKay-Dee Hospital Foundation and helps deliver the pillows to the hospital.

“We love getting things. This is an amazing and fun fundraiser,” she said.

Mom's letter leads to visit with the President

from ABC News by Lauren Putrino: A young man whose mother wrote a letter to President Obama is now scheduled to meet with the president.


Jeremy Carr, 23, has Down syndrome. Carr volunteered with his mother, a Vietnam War veteran, at a road clean-up event in the spring staged by Chapter 862 of the Vietnam Veterans of America. It was one of several veterans volunteer events in which Carr has taken part.


Throughout the morning of the clean-up, he never asked to take a break, didn’t stop to talk about his beloved Pittsburgh Steelers, or his favorite WWE star John Cena, his mother said.  He didn’t even ask for anything to eat or drink.  He asked his mother only one thing several times during the day, “Mom, will President Barack Obama be proud of me for helping the soldiers?”


She reassured him he was, but that wasn’t enough for him.  Carr asked his mother to write Obama to ask him.  For a long time, Theresa Carr put off writing the  letter, she said, thinking, how could she write to the president of the United States with such a request?


But as the months passed, she told ABC News, she asked herself, “How could I not honor such a simple request from a young man who would love nothing more than to serve his country, serve his commander-in-chief?”


In early September, Theresa Carr mailed Obama a letter with her son’s question, never believing he would respond.


She was wrong.


Since his first week in office, the president has read 10 letters every day, culled from the tens of thousands of letters, emails, and faxes the White House receives daily.  And every week, he replies to 15 to 20 of them with hand-written answers.


He responded to the Carrs’ letter, however, in a speech. On Veterans Day, in an address at Arlington National Cemetery, the president said, “Jeremy, I want you to know: Yes, I am proud of you. I could not be prouder of you, and your country is proud of you.”


After the speech, the National Association of Vietnam Veterans of America arranged for Carr to meet the president next month. The group planned the visit to thank Carr for his volunteer work.

Self-advocate pushing for change in law

from The Herald News:

When he’s not taking classes at MassBay, working at one of his three jobs or volunteering, Brian Heffernan is making sure that other young people with Down syndrome and other intellectual disabilities get the same opportunities he’s had.

Most recently, Heffernan, 20, of Newton, has been advocating for a bill at the State House that would change the special education licensing requirements to provide optional advanced training for teachers who want to focus on transitioning children with intellectual disabilities into the competitive work force.

Newton resident Julia Landau, senior project manager for the advocacy group Massachusetts Advocates for Children, said the bill would allow more children with intellectual disabilities like Down syndrome and autism to become productive members in their communities.

“Right now three-quarters of the youth with disabilities in our state ages 16-26 end up in sheltered workshops or [day habilitation] programs or unemployed and we know that youth with disabilities when provided the appropriate transition planning and services can measure up with their potential and can live and work competitively,” she said. “That’s the difference between the tapped and untapped potential.”

Heffernan has been taking classes in courses like criminology, mass media and career and life planning at MassBay for the past two years through the school’s partnership with the Newton Public Schools. The Inclusive Concurrent Enrollment grant program allows public high school students with severe intellectual disabilities who are between 18 and 22 and have not yet passed the MCAS test the opportunity to take inclusive college courses aligned with a career goal.

“I’m really proud of the career and life planning class,” Heffernan said. “It made me think a lot about my career.”

During the school year, Heffernan takes public transportation from his house in Newton to the Wellesley Hills MassBay campus, takes general college classes with his peers and works out after school in the school gym. Last summer, Heffernan was looking for activities to join on campus and noticed that the college didn’t have a glee club like his favorite TV show, “Glee,” so he researched and sought out the required number of signatures to form his own glee club.

Heffernan said his classes at MassBay have helped him decide that one day he wants to have a career in the film or television industry. He’s already written a 52-page TV script, “The Heffernan Show,” loosely based on “The Cosby Show.”

“One day I got on my computer and just started writing,” he said, while walking around MassBay last week.

In between his busy class schedule at MassBay and camp during the summer Heffernan finds time to work as a host at Wally’s World in Fenway Park, as a bagger at Shaw’s Supermarket in Auburndale and as a guest speaker in the “Understanding Our Differences” curriculum in the Newton Public Schools. He speaks to graduate students about his disability at Brandeis, Harvard and Boston universities and during the summer he volunteers at City Hall delivering mail and stacking books at the Newton Free Library.

“He’s really remarkable,” said Landau of the Massachusetts Advocates for Children, in a phone interview.

Heffernan’s mother, Julie Hefferman, said that her son wants to continue to take classes at the college after he passes his English MCAS test. She said that once he passes the English MCAS test he will place out of the special education program in the Newton Public Schools, but will still be able to receive special education services at the college.

“We’ve had a partnership for the past five years with the [Newton schools] to give students with intellectual disabilities the opportunity to take college courses,” said Jayme Finstein, inclusive concurrent enrollment grand coordinator at MassBay. “The goal is to have the courses connect with future career goals. You spend your whole day on campus doing anything that any other student would do.”

Julie Heffernan said her son has flourished through his classes and the new friends he has made at MassBay.

“On Facebook, he has all these friends we’ve never met because he has this whole college life now,” she said.

Landau said she is hopeful that the bill will soon be voted out of the Joint Committee on Education.