National Down Syndrome Society E-Newsletter

 

April 2011

Exciting News About the My Great Story Campaign! 

  

Mother's Day Section

In January, the My Great Story site underwent updates to improve the user experience. Among these changes was the addition of the new holiday section, which will change throughout the year. In anticipation of Mother's Day next month, the latest holiday section will be devoted to sharing and telling stories about the moms in your life. Tell a story about your mother, grandmother, sister, aunt, cousin or friend who has a son or daughter with Down syndrome. Self-advocates, we especially want to hear the stories you have to tell about your moms!

 

While the two stories with the most votes are always featured in our e-newsletter, next month we will also feature the top voted story in the Mother's Day section, so share your stories and spread the word!

 

Click here to submit your story and select the Mother's Day section.

 

Think you can retell your story in 140 characters? Share your My Great Story submission on Twitter with #MyGreatStory and you might see it in next month's e-newsletter too!

 

Click here to follow us on Twitter.

 

My Great Story Monthly Contest

 

Beginning next month, NDSS will be unveiling a new component to the My Great Story site. In addition to the placement in our e-newsletter, the number one voted story each month will receive a prize! Stay tuned for more details next month.

 

NDSS National Policy Center Update
 

 

  • NDSS and George Mason University (GMU) will once again be sponsoring the State of the Art Conference on Postsecondary Education and Students with Intellectual Disabilities to be held November 3 and 4, 2011 at GMU. The 2011 conference will be cosponsored by other national organizations and will feature outstanding speakers and opportunities to interact with experts. Professionals, parents and self-advocates are encouraged to submit proposals for presentations.

Click here for more information about the Conference.

Click here for more information about presentation proposals.

  • NDSS and the National Center for Learning Disabilities, Autism Society of America, Autism National Committee and The Advocacy Institute are sponsoring the Individuals with Disabilities Education Act (IDEA) National Survey Project. The survey examines whether the rights of parents and children with disabilities in special education are protected. A report will be compiled from the responses. There are a few versions of the survey, each appropriate for a different group: parents of children with disabilities, self-advocates (a long and short form), attorneys, advocates, and other professionals. The deadline is June 14, 2011.

Click here for more information and to take the survey.

  • On March 17, 2011, federal legislation was introduced to allow parents to recover expert witness fees in due process hearings and litigation under IDEA. The IDEA Fairness Restoration Act was introduced in the Senate by Senator Tom Harkin (D-IA), Chair of the Senate Health Education Labor and Pensions Committee; Senator Barbara Mikulski (D-MD), and Senator Bernie Sanders (I-VT), and introduced in the House of Representatives (H.R. 1208) by Congressmen Chris Van Hollen (D-MD) and Pete Sessions (R-TX). NDSS has been involved with this bill from the beginning. Now we need your help getting your Representative and Senators to become co-sponsors. Once we have the call-in day information, an alert will be sent out asking everyone to call their elected officials about this bill.

Please see below to sign up to receive policy action alerts if you have not done so already.

 

Sign up to Receive Important Policy Action Alerts

 

Be an Advocate!

 

There are many ways that you can help make a difference in the lives of people with Down syndrome through advocacy. Whether you aren't sure who your local elected representatives are or you are a seasoned advocate, there are ways for everyone to get involved.

 

Click here to learn more and to sign up to receive important action alerts from the NDSS National Policy Center.

NDSS National Policy Center Blog

 

NDSS National Policy Center Blog: Go Behind the Scenes!

 

The NDSS National Policy Center Blog will give you a glimpse into how our policy center works. You may learn about a meeting at the White House or an experience one of our staff members had with a member of Congress. Also look for special guest bloggers and important updates!

 

Click here to view the blog.

Buddy Walk� News

 

 

Buddy Walk� Survey 

 

Congratulations to Becca Brandt of South Puget Sound Up With Down Syndrome for winning a free registration to the 2011 Buddy Walk� conference! The first 100 Walk organizers to submit their completed Buddy Walk surveys were entered into a drawing to win a free conference registration. Thanks to all of those who completed the survey!

 

Registration is open for the 2011 Buddy Walk Season!
 

Attention Walk Organizers: As a reminder, Buddy Walk events must be registered each year with NDSS.

If you have already registered your Walk for this year, you do NOT need to register again. If you have not registered your Walk, please do the following:  

  • Click here to log-in using your user name and password from last year
  • Once logged in, click on "Register a 2011 Walk" and complete your Walk registration
  • A custom License Agreement will be emailed to you once your registration has been reviewed

If your organization is interested in organizing a Buddy Walk for the first time, please click here to get started.

 

Visit www.buddywalk.org to get involved and be inspired!

 

The 2011 Buddy Walk Conference is Almost Here!

The 3rd Annual Buddy Walk Conference is approaching quickly and we want to remind you that the deadline to reserve a room at the Hilton San Diego Gaslamp Quarter is Wednesday, April 7.

To make a reservation, call 1-800-HILTONS (800-445-8667) and mention National Down Syndrome Society. All reservations must be made by April 7, 2011 to receive the group rate.

We are putting the finishing touches on what will be a day to invigorate, encourage and enrich Walk organizers from across the country. The conference will take place on Saturday, April 30, from 8:00 am - 4:30 pm.

The 2011 Buddy Walk Conference will include the following sessions:

  • Blackbaud/Kintera 101 (for groups interested in learning about the benefits of the software)
  • Blackbaud/Kintera 102 (for groups currently using the software)
  • Community Involvement and the Buddy Walk
  • What's Holding You Back
  • Smart Budgeting
  • Event Day Activities
  • Creating a Communication Plan to Engage Participants
  • Roundtable Discussions including Sponsorships, Teams, Volunteers, Incentives, Self-Advocate Projects and Public Relations

Click here to view the preliminary conference schedule.

 

Here is what attendees had to say about the 2010 Buddy Walk Conference:

"I love everyone's enthusiasm and knowing that there are so many of us striving to reach the same goals yet we come from all different demographics!"

"Having representatives from different groups present their success stories is a crucial part of the sessions. It gives others a chance to see what works, what doesn't work and how other groups achieve success."

"What a great meeting of the minds! Thank you so much for your continuous support at the NDSS office!"

Click here for more information on the conference.
Click here to register for the conference.

 

If you're not able to attend the Buddy Walk Conference, you can register as a virtual attendee to have access to the conference presentations after the event.

Click here to register as a virtual attendee.
 

If you have any questions, please click here to e-mail Becky Switalski, National Buddy Walk Director, or call 877-526-0270.

We look forward to seeing you at the Buddy Walk Conference!

This conference is presented by NDSS and co-sponsored by the Down Syndrome Association of San Diego. 

     

 

Gift Ideas that Benefit NDSS

    

Welcome Spring! With Mother's Day about five weeks away and Father's Day just five weeks after that, it is a great time to remind you about some of our charitable retail partners.


Last year, NDSS joined forces with Bee Inspired, a company co-founded by Kristin Novak. Kristin's inspiration for her first Bee Inspired Signature Box was her niece, who has Down syndrome. Today, the company has grown and they are offering new themed boxes, one of which is for Moms!

Click here to check out the Bee Inspired collection. Proceeds from your purchase will be donated to NDSS.


Longtime partner Featherstone Design, is also ready to make your Mother's Day dreams come true. An NDSS Bow Pin from Featherstone Design is a unique piece for any pin lover. In 2010, Featherstone Design elected to donate 100% of all Bow Pin purchases (including shipping and handling) to NDSS. If your jewelry tastes go beyond a classic sterling silver pin, Deirdre and the studio team are happy to work with you to create a more personal NDSS Bow. You can customize your NDSS Bow by adding a birthstone detail or upgrading to gold or platinum. You can also create an entirely new piece of jewelry; a necklace, earrings, a ring, a charm, etc.

Click here to learn more about Featherstone Design.

Click here to make a purchase, or call the Featherstone Design Studio at 212-343-0604 to explore your options and create a custom jewelry story with them.


For a wide selection of gift baskets, sweets, flowers, jewelry and other unique items for men and women, visit Giftback.com, and they will donate 10% of every purchase made when you choose the National Down Syndrome Society as your charity of choice. Your gift recipient will be notified via a card message that a portion of their gift was donated to NDSS.

Click here to learn more and support NDSS with your purchase.


For the coffee lover in your life, don't miss the opportunity to send a care package from The COFFEE Idea. NDSS private label coffee and other specialty beverages and products are available in the store. They will donate 50% from each purchase to the National Down Syndrome Society with an additional 25 cents per purchase going to the College Transition Connection.

Click here to order from the COFFEE Idea.

 

Shop NDSS is open year-round for gifts that give back.

 

 

Tischer's Troops: Marching Towards a Better Tomorrow

When NDSS launched the Endurance Athlete program some exceptional human beings stepped forward to participate. People who push themselves physically, and on top of that, also challenge themselves as fundraisers. Holly and Steven Tischer of Tischer's Troops embody each of these traits.

Steven Tischer has been serving in the United States Army for nearly 20 years. Steven and his wife, Holly, are currently stationed at Camp Humphreys in South Korea. Steven's son Matthew, who has Down syndrome, does not live with them overseas, but they advocate for his rights and raise awareness about Down syndrome every day that they are apart from him.

"Although I've seen many battles, there is an ongoing fight for my son's right to have the greatest opportunity for success in a society that still discriminates against people with disabilities," Steven says.

Advocating for Matthew is what motivates Steven and Holly and what gives them strength each time they head out for a training session (especially in the snow and freezing temperatures).

 

For nearly three months, Steven, Holly and others in South Korea who have joined Tischer's Troops, have been showing their support for Matthew and others with Down syndrome through a series of ruck-marches. A ruck-march consists of marching a specific route and distance carrying a rucksack or pack that contains a certain amount of weight or a specified packing list. Tischer's Troops have been ruck-marching each week with banners and flags to get the word out about Down syndrome and to stop the continuous cycle of discrimination against people with disabilities. This means that each time Steven and Holly set out they are carrying heavy rucksacks on their backs. On March 21, for World Down Syndrome Day, they ruck-marched a full marathon- 26.2 miles. Talk about ENDURANCE!

All of this training is leading to an even more significant challenge. When Tischer's Troops return to the states, their goal is to ruck-march a full marathon in every single state!

In addition to this intense physical commitment to raise awareness about Down syndrome, Steven and Holly have pledged to raise money for the cause. So far, they have raised over $400 from supporters at Camp Humphreys, with a majority of funds raised by their innovative 'Dog Tags for Down Syndrome' campaign. These paper dog tags are in the same vein as the paper ribbons, balloons or stars you may see hanging in your local grocery store or bank.

NDSS thanks Steven and Holly Tischer for their commitment to "marching towards a better tomorrow" for Matthew and all people with Down syndrome.

 

If Tischer's Troops has inspired you, visit the NDSS website to learn more about the ways you can become an advocate for people with Down syndrome.

 

Click here to learn more about Tischer's Troops.

Click here to learn more about the NDSS Endurance Athlete program.

Scholar Spotlight

    

Each year NDSS awards postsecondary scholarships to students with Down syndrome through the Joshua O'Neill and Zeshan Tabani Enrichment Fund. In 2010 seven outstanding students received grants to help cover the cost of their postsecondary or enrichment courses. Recipients of the 2010 Joshua O'Neill and Zeshan Tabani Enrichment Fund were invited to write about their experiences as students. 

 

 

Laura Smith of Lebanon, Kentucky, enjoys singing, dancing, acting and working with kids.  Her dream job would incorporate all of those activities.  She plans to study child development, cooking and literature.  Laura attends Elizabethtown Community Tech College.  She sees college as an opportunity to gain independence and responsibility.

 

 

 

 

"I haven't got my grade yet but it will be an A or B.  I had the best attendance for sure. It was a small class - only 5 - because the school is a brand new community and tech college.

 

The town (Elizabethtown, Kentucky) has about 5,000 people.  I took a reading class. It was a developmental class. No one else there had Down syndrome. 

 

I liked the class and it was good to talk about it with my cousins who are in college.  I posted it on my Facebook and took a picture on campus to show off!

 

What I liked was writing the book reviews. I had already read the books. "Three Weeks with my Brother" by Nicholas Sparks and "Harry Potter."  I got A's on both.  My mom helped me a little. I had a friend approved to go to class with me one day a week.  She helped me get the notes but really didn't help that much.  My teacher was so nice and really liked me.

 

I had just one class Tuesday and Thursday from 4:30-5:45 I lived at home and my friend (aide) drove me the 20 minutes.

 

There was lots of vocab and reading homework, several tests and a hard final.  The other people in class were nice.  They missed me on fall break. When I was out of class I live at home, work 2 part time jobs, swim laps, work with a trainer at the fitness center.  I will take class a little at a time every semester. Some will be Adult Ed classes like computer class. 

 

On the other days I did the homework from the vocab book- lots of new hard words. Each chapter had 20 new words with definitions and stories to fill in.  Then the other book I had to read 40-50 boring pages about organizing. 

 

One of my vocab words was metamorphosis - my favorite new word. Thanks for the scholarship!"

 

 

Enrichment Fund Application Now Available

2011 Joshua O'Neill and Zeshan Tabani Enrichment Fund Application is Now Available

The Joshua O'Neill and Zeshan Tabani Enrichment Fund offers financial assistance to young adults (18+) who have Down syndrome and wish to continue to enrich their lives by enrolling in postsecondary programs or taking enrichment classes that will help them to enrich life through employment, independent living skills, life skills or another way. All applications must be postmarked or emailed by July 15.

 

Click here to learn more and download the application.

Sprout Film Festival

 

The Sprout Film Festival brings together film and video related to the field of developmental disabilities. Generally, people with developmental disabilities as subjects and performers remain marginalized in the media; the Sprout Film Festival aims to raise their profile by showcasing works of all genres featuring this population.

By presenting films of artistry and intellect, the festival hopes to reinforce accurate portrayals of people with developmental disabilities and expose the general public to important issues facing this population. The goal is an enjoyable and enlightening experience that will help break down stereotypes, promoting a greater acceptance of differences and awareness of similarities.

 

Click here for more information.

Down Syndrome:

A Family's Journey

The Times News' series titled Down Syndrome: A Family's Journey, follows Mary Anne Christo and her husband Eric Waksmunski as they prematurely welcome twin boys, Wyatt and Shane, and discover upon their births that both boys have Down syndrome. To tell their story, and to reach out to other families who may face a similar experience, the Waksmunskis have agreed to open their home and their lives and share this special journey in an ongoing series.

Click here to read the most recent chapter in the series.

Toys "R" Us Model Search

For over fifteen years, Toys "R" Us has published the Toys "R" Us Toy Guide for Differently-abled Kids, giving parents and friends of children with disabilities an easy-to-use selection of toys that offer them the best opportunity for fun and learning. Toys "R" Us is now looking for children to model for this year's Toy Guide.

 

Click here for more information and to print the casting form.

Board Member Profile of the Month: David Patterson

        

We are pleased to introduce David Patterson as the NDSS featured board member of the month.

 

How did you first become involved in the Down syndrome community?

 

I became involved in the Down syndrome community because of an early scientific finding made in my laboratory that allowed the isolation of human chromosome 21 away from all the other human chromosomes in rodent cells (Chinese hamster ovary cells, or CHO-K1 cells).  This allowed the fine mapping of genes and eventually DNA markers to relatively precise regions of chromosome 21 and was an important step in the sequencing of the chromosome and the identification of genes on chromosome 21 that are likely to be important for the health and well-being of people with Down syndrome and indeed of all people.

 

How did you become a leader at NDSS?  Why did you choose to work with NDSS?

 

My initial awareness of NDSS was through attendance at some of the early NDSS sponsored research conferences.  However, it was really Charlie Epstein, former NDSS Science Advisory Board Chair, who got me hooked.  In 1987, he invited me to join the Science Advisory Board, which helped run the research conferences and selected the recipients of the NDSS Scholar Award Program, which ran from 1983-2000.  I had the honor of editing three of these published proceedings, two with Charlie.  When Charlie stepped down as Chair, he was instrumental in my being selected as his successor.  I chose to work with NDSS because of its clear role in supporting research about Down syndrome at that time. In those days it was the only organization to substantially sponsor research, both by its support of conferences and Scholars. 

 

Since joining NDSS, what have been some of your favorite initiatives to be a part of? 

 

The sponsorship of scientific conferences was a critical activity.  These conferences allowed the sharing of the latest ideas and data regarding Down syndrome, led to new ideas, and very importantly, to new collaborations that immeasurably advanced our understanding of Down syndrome.  The support of young researchers entering the field of Down syndrome was also critical, since it was difficult, especially for young investigators, to get any research support for work on Down syndrome.  Many leaders in the field got critical support early in their careers from NDSS.  These were clearly my favorite NDSS initiatives and I am honored to have been a part of them.

 

What would you say are some of the critical issues facing people with Down syndrome and their families today?

 

There are numerous critical issues facing people with Down syndrome and their families. My focus in this regard is on the health and medical issues.  We are currently at a time in which so much has been learned through research about Down syndrome that it is possible to design clinical trials aimed at improving the intellectual abilities of people with Down syndrome.  Moreover, largely because of improved health care and inclusion, the life expectancy of individuals with Down syndrome is now approaching 60.  For the first time we are getting a good idea of what aging looks like in individuals with Down syndrome.  The most obvious example is the increased risk of developing Alzheimer's disease, but other issues are also becoming apparent.  Thus, research to understand the aging process in people with Down syndrome is essential. 

 

 

My Great Story: Stories of the Month

 

Each month, the two stories with the most votes on the My Great Story site are featured as the Stories of the Month. The votes are reset at the end of each month.

To add your own story, or to vote or comment on others, visit www.ndss.org/stories. 

The top voted story this month, I Know I Can, by Jennifer Hinds from Laguna Hills, California, was already featured in our e-newsletter in September, 2010. Click here to view Jennifer's story, which can be found on page seven.

 

The Advocate

Sarah Brachman

Frankfort, Kentucky

 

On February 7, I went to Washington, DC to receive the National Down Syndrome Society's Advocate of the Year Award for 2011. The National Down Syndrome Society is a wonderful organization that supports those of us who are born with Down syndrome. I was born August 24, 1983 in Ft. Worth, Texas, the youngest of three children. I have a great family. We all love and support each other. I believe that is the real reason why my story is so great.

 

I went to a Montessori school. I went to camps. I have travelled all over the world with my family and I have been very fortunate to have a life filled with many opportunities.

 

I have never stopped learning. At Stewart Home School in Frankfort, KY, where I live, I am in classes every day. I also work in the school's Music Department. I sing in the chorus. I am on the basketball team. I serve in our Student Government and I have volunteered at US Representative Pete Sessions' office and am currently volunteering at my US Congressman Ben Chandler's office in Lexington.

 

When I visit my family in the Washington, DC area, I go to the Capitol. I speak with the Congressmen there and I have asked them to join the Down Syndrome Caucus. I have signed up more than 30 US Representatives so far and I plan to sign up the others. I'll be back on the Hill this summer and I will continue to ask our elected officials to consider supporting the ABLE act. ABLE stands for "Achieving a Better Life Experience." That is exactly what our country stands for and what every family wants for their children. I will also be asking them to be sure that the National Institute of Health has the funds to continue its research into the health issues facing our citizens who have Down syndrome. I plan to continue to do everything I can to advocate for all of us.

 

I am also planning to be a counselor at a camp for children with Down syndrome this summer. The camp will focus on health and wellness. I have been a counselor at Camp Ramah in California before. I actually attended myself when I was younger, so I have experience. I love helping others and I love advocating for others, too.

 

I have a wonderful life full of friends and great opportunities every day. Everyone deserves a full life! Everyone deserves to have a great story to tell. I am working hard to make sure that their stories will come true!

 

Evan, The Actor 

Evan Sneider

Cape Cod, Massachusetts 

 

My name is Evan Sneider. I'm 32 years old. My passion my whole life has been acting, and my story is about an amazing opportunity and the the wonderful adventure I've been experiencing.

 

When I was very young, I loved acting in my first play so much that I continued performing in every school play, in a youth summer theater program, took theater classes and as an adult auditioned for community theaters. I've performed in more than 20 productions so far. Since I'm a huge Stephen Sondheim fan my favorites have been musicals he's composed.

 

My film work began in 2007. Friend and high school classmate, Justin Lerner, had a UCLA film school graduation requirement to create a short film. Knowing I loved to act, he audtioned me for a small role in his thesis film. I was cast in a small role and I loved the experience.

 

After his thesis film was completed Justin went on to win the Emmy for Best Student Director and took his film to many film festivals where he got alot of praise. I was told people always asked about me. Justin met producers Jerad and Kristina Anderson who wanted to work with him, creating a film with me in the starring role. How incredible is that? This film is GIRLFRIEND.

 

In September 2009 filming on GIRLFRIEND began. I met and worked with my wonderful co-stars Amanda Plummer, Jackson Rathbone and Shannon Woodward and many other talented cast and crew. Everyone worked very hard and put a lot of love into GIRLFRIEND. Sometimes the days were long and the weather was bad, but I didn't mind at all because I love acting so much. Post production work in New York was fun too. I learned so much and everyone was so wonderful to work with. Once the film was completed it was submitted to the Toronto International Film Festival. Everyone was so excited when GIRLFRIEND became an official selection at TIFF!

 

In September of 2010 I traveled to Toronto and had the most incedible time. I had full days of press, photo shoots, interviews, parties and of course 3 premiere screenings of GIRLFRIEND (all were SOLD OUT!). The film received critical and audience acclaim (standing ovations at each screening), and one reporter actually called me "TIFF's New Star!".

 

Now we are working to get GIRLFRIEND into as wide a theatrical release as possible. Please check out www.indiegogo.com/girlfriend-2 to learn more. Other sites are http://indiefilmproducer.blogspot.com, producer Shaun O'Banion's blog and GIRLFRIEND's official site www.girlfriendmotionpicture.com. Or you can just Google my name! :) There's much more to read about my amazing experience and about our film GIRLFRIEND.

 

I want to encourage everyone to follow your dreams. Growing up when I told my Mom about a goal I had, she would talk to me trying to prepare me for challenges I might face. I always told her "Mom, I can try!". I want to tell everyone that it is important to believe in yourself and follow your dreams. You never know what might happen!

 

 

My Great Story

in the Media

The My Great Story campaign received a lot of attention this past month in honor of World Down Syndrome Day. Here are some of the great placements across various media.

 

The Boston Globe covered Kristen Franks' story about her sister, Jacqueline. 

Click here to read the article. 

 

 

In Fort Myers, Florida, Gulf Coast Live spoke with Shannon Blaeske about her submission to the campaign, and NDSS Board Member, Dr. Brian Skotko, about his work in the field.

Click here to listen to the segment.

 

 

In Dayton, Ohio, Chic Mom Magazine ran a story about Destiny Robinett and her story about her daughter, Presley.

Click here to read the article.

 

 

In Oklahoma City, Local Perspectives aired a segment about the My Great Story campaign.

 

 

 

 

The Indy Star, in Indianapolis, promoted the campaign and other NDSS initiatives for World Down Syndrome Day.

Click here to read the article.

 

 

The Seattle Boomer Examiner covered the campaign and its Celebrity Ambassador PSAs.

Click here to read the article.  

 

In Cincinnati, Ohio, Cincinnati Family published a post about the My Great Story campaign.

 

 

 

Lifestyles Radio aired annoucements about the My Great Story campaign throughout the weekend leading up to World Down Syndrome Day.

 

 

 

 

Associated Content published an article about the campaign and other NDSS initiatives for World Down Syndrome Day.

Click here to read the article.

 

 

Mamalode Magazine covered the My Great Story campaign on its website.

Click here to read the article.

 

Mothering Magazine used various media to spread the word about the campaign.

Click here to read the article.

Click here to read the Facebook post.

Click here to read the tweet.

 

Parenting Magazine tweeted about the My Great Story campaign.

Click here to read the tweet.

 

 

 

NDSS would like to extend a special shout out to everyone who blogged, posted and tweeted about My Great Story this month. Here is a selection of those who did:

 

Mommy Life

Down Syndrome Daily

Life's Little Surprises

Chase and More

Mom Knows it All 

Enjoying the Small Things

Abled Body

Living with Special Needs

My 719 Moms

Acting Balanced

Significantly Simple

@TRWCreditSoCal

@BarbaraCurtis

@SueAtkins

@ColoradoMidwife   

@EcoDivasCanada

@ConnectionsKids

@GummyLump

 

Thanks for all of your support and continuing to spread the word!

Social Media

Use your social networking tools to create some NDSS buzz:

Click here to become a fan of the National Down Syndrome Society Facebook page.

Click here to become a fan of the Buddy Walk Facebook page.

Click here to follow My Great Story on Twitter.

Click here to follow the Buddy Walk on Twitter.