National Down Syndrome Society Newsletter-Jan 2012
National Down Syndrome Society E-Newsletter
the River and Through the Woods:
Where Have Your Worn Your 3:21
NDSS is thrilled with the initial response to
the recently launched 3:21 signature t-shirts. Men, women and children all over the country are wearing
their 3:21 t-shirts and raising awareness for Down syndrome wherever they
Last month, NDSS featured some 3:21 t-shirt models as they struck a
pose in the new styles. Now we invite everyone who purchased a t-shirt to show
it off! The holidays are not only a time for gift giving, but for family
togetherness - wherever your family might be, we'd love to see all of the great
places you've worn your 3:21 t-shirts. Whether your family is having a white
winter, a tropical season or somewhere in between, show us how you sport your
us your photo for a chance to see it used in our World Down Syndrome Day
email your 3:21 t-shirt photo to Jordana Stern, NDSS Communications
NDSS National Policy
Walk® on Washington
Buddy Walk® on Washington is just around the corner - February 29
to March 1 in Washington, D.C. The annual two-day advocacy event brings the
Down syndrome community together to advocate for public policies that impact the
lives of people with Down syndrome and their families. Attendees have the
opportunity to meet with members of Congress and their staff to advance
legislative priorities, such as the Achieving a Better Life Experience (ABLE)
year, NDSS and Down Syndrome Affiliates in Action (DSAIA) are holding the Buddy
Walk on Washington and the DSAIA conference concurrently, allowing anyone who
wishes to attend both events to save on travel cost and time. The partnership
was established to maximize the power and presence of the Down syndrome
community on Capitol Hill.
fee for registration, which includes a ticket to the dinner reception on
February 29, is $25. The deadline for registration is January 27. Click
for the Buddy Walk on Washington: Advocacy Training Session &
NDSS National Policy Center hosts several training opportunities to ensure our
advocates are well prepared for their meetings on Capitol Hill. As part of the
Buddy Walk on Washington, on February 29, from 3 - 6 PM ET, NDSS will host its
advocacy training session for all participants. The advocacy training session is
an opportunity to learn the priorities for the 2012 Buddy Walk on
Washington from the NDSS Policy Center staff. Attendees will have
the opportunity to hear presentations on the key "asks," participate in
role-play sessions with state delegations and network with affiliates and
advocates across the country.
to the Buddy Walk on Washington, NDSS will host two webinars to prepare
participants for the event. We request that all attendees partake in at least
one webinar (Note: webinars will also be recorded and posted to the NDSS
website.) The dates for the webinars are January 24 at 1 PM ET and February 2 at
1 PM ET. Registration
information for the webinars will be posted on the NDSS website soon.
for the Buddy Walk on Washington as soon as possible allows NDSS to communicate
important information about the event (i.e., how to set up meetings with your
members of Congress, communicate with others attending from your state, etc.),
so please take a few moments and register now.
hope to see you there!
Click here to email Sara Weir, NDSS Senior Policy
Advisor, for more information.
up to Receive Important Policy Action Alerts
Be an Advocate!
Whether or not you will be attending the Buddy
Walk® on Washington, you can help make a difference in the lives of
people with Down syndrome through advocacy year-round! If you aren't sure who
your local elected representatives are or you are a seasoned advocate, there are
many 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
Spanish Brochure and Redesigned New Parent Packet
NDSS is excited to unveil "La Sociedad Nacional de Síndrome de
Down," a Spanish language version of our 10-page brochure overview of Down
syndrome and NDSS. In addition to creating the Spanish version of the brochure,
we have updated and reprinted the English version of the brochure and redesigned
and updated our 46-page new and expectant parent guide, "A Promising Future
Together," and its Spanish counterpart, "Un Futuro Prometedor Juntos."
Click here to download an
electronic version, request a hard copy or place a bulk order of each
Congratulations and thank
you to the following Walk organizers for being the first ten to complete the
2011 Buddy Walk Organizers Survey. They will each receive a $20 gift certificate
from Buddy Walk National Partner, Down Syndrome Footprint, in
addition to being entered into a drawing for a free registration to the Buddy
Walk Conference in Boston, MA this spring.
Stacy Quaid, Manasota BUDS (FL)
Bobbie Dawson, Allen County Down Syndrome Awareness Group
Joseph Ferrantella, Down Syndrome Association of Northwest Indiana
Cynthia Jones, Down Syndrome Association of Atlanta (GA)
James McFadden, Southern Utah Down Syndrome Association (UT)
Carla Macks, Acton Up With Downs (FL)
Joyce Cordell, El Paso Community College Diversity Program
Angela Ortiz, Massachusetts Down Syndrome Congress (MA)
Melissa Fitch, Down Syndrome Association of Santa Barbara County
Janet Bailey, Opheim Buddy Walk (MT)
It's not too late to
be entered into the conference registration drawing! Click here to fill out the survey
and be eligible to win one free registration.
2012 Buddy Walk
The 4th Annual Buddy Walk
Conference will be held on Saturday, April 28, in Boston, MA. We are putting
the final touches on the schedule of events and encourage you submit topics to
include in breakout sessions and roundtable discussions.
Click here to email your suggestions to Rebecca
Switalski, NDSS National Buddy Walk Director. Interested in being a speaker? Let
us know that too!
2012 Buddy Walk Season
Registration is open for the 2012
Buddy Walk season! Please remember that a new registration must be completed
each year in order for your group to remain a part of the national program.
Once your Buddy Walk registration has been received by the NDSS office, a custom
license agreement will be emailed to you. When the signed agreement is returned
to the NDSS office (by mail, fax or email) your Walk registration will be
Click here to log-in and register your Buddy Walk.
Don't remember your password?
Click here to have it emailed to you.
Share Your Buddy Walk Stories
Do you have a Buddy Walk story
you'd like to share? Click here to view the My Great
Story Buddy Walk section and click the 'submit' bookmark to add your
The Buddy Walk staff at NDSS is
working on a little something to celebrate your participation in the National
Buddy Walk program. Please click here to answer a quick one
question survey to make sure our information is correct!
is energized by motivated people who contact us about wanting to make a
difference in their community and on a national level. Each month, this section
features an individual, family or group who has donated time and energy to
creating exciting ways to support the value, acceptance and inclusion of people
with Down syndrome by raising awareness and money for NDSS.
November 2010, NDSS was contacted by a group of four 8th grade students (now 9th
graders) from The Woodlands, TX. Madison Chollett, Ben Gooch, Ian Kennedy and
Cole Saleh participate in a program called DestiNation Imagination, in which
students use out of the box thinking and problem solving skills to create a
presentation that is then judged on a given
For their 2011 presentation, they chose the Community Outreach Project,
the goal of which is to identify a need in your community and make a change
accordingly. Each member of the team has a personal connection to someone with
Down syndrome, so they chose to raise awareness for people with Down syndrome.
As a part of the project, they also decided to raise funds for
The group designed custom charm bracelets featuring the Buddy Walk®
logo. They sold the bracelets throughout the year to classmates and friends,
online and at special events, and in December they donated $800 to NDSS. Many of
you purchased bracelets directly from them earlier this year when they were
featured in our e-newsletter.
In addition to the funds they donated to NDSS, the group also donated
extra bracelets that NDSS can sell. The group covered all of the upfront costs,
so 100% of every bracelet purchased goes to NDSS.
Bracelets are sold separately (thin or thick band as seen above) for
$10 each. They are available as long as supplies last.
Thanks to Madison, Ben, Ian and Cole for their innovation, leadership,
contribution, and really cool legacy - suppporters of people with Down syndrome
will continue to wear these bracelets for a long time!
Click here to download an order
form and make a purchase.
Click here to contact Pam Sandonato, NDSS VP of
Development, about your own fundraising idea.
month, NDSS announced its search for bloggers who share their stories,
wisdom and journeys about Down syndrome. We received many wonderful responses
from parents, siblings and friends of people with Down syndrome who blog about
their loved ones - thank you to those who shared your blogs with us! We want to
make sure we continue to grow our database of bloggers so we can work together
on future outreach initiatives.
you'd like to stay closely connected to NDSS in cyberspace, and have not yet
sent us your blog information, please click here to send an email with your name, blog title
and URL to Jordana Stern, NDSS Communications Associate.
How David Met
Anne Kelleher's newest novel, How
David Met Sarah (eFitzgerald Publishing, 2011), might appear to be an ordinary
story about a young man who works in a mail room, lives at home with his parents
and falls in love. But unlike any of her previously published work, How David
Met Sarah was inspired by and written for Anne's youngest brother, a 36 year old
man with Down syndrome.
An internationally published
author of eleven sci-fi/fantasy and romance novels, Anne decided to write How
David Met Sarah because as much as her brother has always enjoyed a good story,
it's difficult to find books that hold his interest. Most stories written at his
reading level are for children.
"My mother put the idea in my
head when my first novel was publishedback in 1995," says Anne. "I wanted to
write the story for two reasons. The popular perception of people with a
disability like my brother's is that they're like children. But my experience of
my brother is that he wants the same things any adult would want - satisfying
work and a special someone to love. So I wanted to give my brother not just a
story he could read and enjoy, but also one that had a hero with which he could
How David Met Sarah is both
content and reading level appropriate for adults with lower level reading
skills, although everyone who reads it enjoys the storyline. Like the main
character, the "real" David lives with his parents, works in a mail room, and is
searching for the girl of his dreams. He loved the story so much that Anne plans
to write a five book series, continuing the main character's story. She is
currently finishing the second book, titled When David was Surprised.
20% of the profit from sales of
How David Met Sarah will be donated to NDSS.
Click hereto buy the book from Barnes & Noble for Nook or in
print. Or, ask for it at your local Barnes & Noble book store.
Click hereto buy the book from Amazon for Kindle or in
Click hereto contact and follow the author. Anne and David are
available for book signings and/or workshops and
Monica & David on
& David is now available on DVD! The Emmy-nominated documentary
follows the love story of two adults with Down syndrome and the family who
strives to support their needs. The DVD includes the complete film,
deleted scenes and a bonus video about employment in the Down syndrome
community. The DVD is fully accessible and bilingual, with English and Spanish
audio description and subtitles for those who are deaf or hearing impaired.
Click here to buy the DVD. When
you use this unique link, 10% of your purchase will be donated to
Come Together for a
NDSS is seeking
leaders from across the country to join us in an effort to plan multiple events
in multiple cities on Wednesday, March 21, official World Down Syndrome Day!
Here is one great example of an upcoming event:
In Chicago, IL,
the 5th Annual Dream BIG Benefit has been scheduled for March 21. This special
event will include food, drinks and inspiration, and all funds raised will
support the O'Neill Tabani Enrichment
Fund, a postsecondary education scholarship fund for young adults with Down
WHEN: March 21 from 6:00 - 9:00 PM
CT WHERE: Theory
9 West Hubbard Street,
Chicago, IL COST: $50 in advance or $60 at the door
deal - buy two tickets for $90 DETAILS:
cocktails, dessert, raffles and prizes
Click here to contact Dream BIG Chicago for more information and to
starting an event in your area that can expand our presence in your community
and raise money and awareness in honor of World Down Syndrome Day.
Click here to contact Pam Sandonato,
NDSS VP of Development, to share your thoughts and learn how you
can help make a difference your own way.
Stay tuned for details about a Twitter party using
#321 on the night of these events.
year NDSS awards postsecondary scholarships to students with Down syndrome
through the O'Neill Tabani Enrichment Fund. In 2011, twelve outstanding students
received grants to help cover the cost of their postsecondary or enrichment
courses. Recipients of the 2011 O'Neill Tabani Enrichment Fund were invited to
write about their experiences as students.
This month's Spotlight is on Mary Warm of Kansas City, MO. Mary is
dual-enrolled at Penn Valley Community College and Archbishop O'Hara High
School, both in Kansas City. She is a senior at O'Hara, where she is a member of
the National Honor Society. At Penn Valley she is taking the classes she needs
in reading and writing so that she can start to take classes in early childhood
education. She volunteers about 200 hours a year for the Head Start preschool at
the local YMCA and has helped teach the Sunday School 4th and 5th grade
students. Next year she hopes to continue her education at either at Penn Valley
or in a new inclusive program at the University of Central Missouri.
her scholarship application Mary wrote, "There is something that you don't know
about me. I have a dream to go to Hollywood. I really want to see famous people
I like. I also have a wish. I wish I could be an assistant teacher with kids. I
also have a hope in the world. I hope kids who are poor have an education." Mary
has been working at a Head Start program, so she has been gaining experience but
needs education past high school. With this scholarship, Mary says, "Now, I can
start to get the training I need to be a preschool assistant
NDSS congratulates Mary on her hard work this semester. She is
a terrific role model for other students with Down syndrome who wish to pursue
their dreams to enrich their lives through postsecondary
here to learn more about
the O'Neill Tabani Enrichment Fund.
Task Group on Intellectual Disabilities and Dementia Practices
NDSS is one of several
organizations collaborating with the National Task Group (NTG) on Intellectual
Disabilities and Dementia Practices as they work to develop a national strategy
to address the growing needs of individuals with intellectual disabilities
affected by dementia. The most recent meeting was held in Washington, D.C. on
November 8. Madeleine Will, NDSS VP of Public Policy, was in attendance as the
NTG reviewed its latest efforts and solicited further input from collaborating
The National Task Group (NTG) is currently completing an
extensive report on individuals with intellectual disabilities affected by
dementia, their families, care givers and communities. This report will be
presented to the National Alzheimer Project Act (NAPA) Advisory
Council on Alzheimer's Research, Care and Service at their January 17-18 meeting
in Washington, D.C.
It is the hope of the National Task Group (NTG) that
these efforts will contribute significantly to the national conversation on how
to include the concerns and needs of people with intellectual disabilities
affected by dementia and their families in any future national plan.
Click here to visit the website
of the American Association of Developmental Medicine and Dentistry (AADMD) for
more information about the NTG and its activities to date. The final document
"My Thinker's Not Working: A National Strategy for Enabling Adults with
Intellectual Disabilities Affected by Dementia to Remain in Their Community and
Receive Quality Supports" will be posted on the AADMD site in the next few
The Department of Health and
Human Services (HHS) continues to seek input on the National Plan for
Alzheimer's Disease and Related Dementias (ADRD). All are
encouraged to consider voicing concerns about the need to include individuals
with Down syndrome and other intellectual or developmental disabilities in
future care and service plans. Click here to
send your comments.
Click here to visit the NAPA
website and learn more. If you would like to be alerted when new information is
available about NAPA, a Listserv is also available that will automatically email
you a monthly message. Click here to email and join. Whatever email address the message is
sent from will be what is used in the Listserv. Please include "subscribe
NAPA-L" and your name in the body of the message.
Great Story of the Month Contest
Congratulations to Nikki
Papoulides, of Canton, OH, on winning the My Great Story of the Month Contest!
Nikki's story received the most votes in December, so she will be receiving a
gift box of BISCOTTEA & BIS*COFFEE Gourmet
In January, the author of the story with the most
votes will win a $50 gift certificate to ShoeBuy.com. Share your story and
spread the word throughout the month to win this prize!
ShoeBuy has the largest selection
of women's, men's and kids' shoes. Choose from over 1,100 brands, 1,000,000
products, the most styles per brand and the most up-to-date fashions. Shopping
for shoes at ShoeBuy is risk-free. Plus, enjoy free shipping and free return
shipping on U.S. orders.
This is Tasho, an amazing seven year old boy, who happens to have
Down syndrome. We have come along way from the shock of a prenatal diagnosis,
three days later I found myself using the word included for the first time. I
told the doctors, that there was no need to give me my options, this child will
be included. Those words hold true today. Tasho is the first child in our school
district to be fully included in general education classrooms at the elementary
level. Tasho has been included since he started kindergarten, he is now in the
second grade. Being the first is always ground breaking, not just for us, but
for our entire community. It really is a situation where everyone is a winner.
His peers learn that it's ok to be a little different and to learn differently,
his teachers learn that children who happen to have Down syndrome can learn
right next to their typical peers and Tasho learns to be a fully functioning
member of his society.
Our IEP team works hard in making
certain that inclusion works. The kids at school know who he is, and are
accepting of him. During the past few years, Tasho has received academic
achievement awards, and good character awards as well. It is a road less
traveled but it is a road worth taking. Tasho is an inspiration to everyone, and
we all stand in awe at his accomplishments and achievements. It's not always
perfect, and mistakes are made at times, but that's ok, because he is paving a
path for other children as well, breaking down the stigma and stereotypes that
often plague our children. It is an honor to be Tasho's mom and advocate. But in
the end, he is the one that has to do the work, and for this I couldn't be
prouder of him. Inclusion works!
Keegan Cindy Rhinevault Toledo,
This is our precious son Keegan - who can light up a room with his
beautiful smile and sunny disposition. He loves to give sloppy wet kisses and
finds it funny to wipe them off. Since his birth in 2008 Keegan has had some
health issues which included open heart surgery and recently he was diagnosed
with unilateral hearing loss. However, this doesn't cause his daddy and me to
put limitations on Keegan. Instead, we have decided to encourage him to reach
his fullest potential through love and patience. Keegan has taught his entire
family that love is not what you look like or your abilities, it's about who you
are on the inside that counts.
My Great Story
Congratulations to Richard Alesky, whose story
received the most votes in the My Great Story Holiday Section!
A Thanksgiving to
Richard Alesky, Downers Grove,
My late brother, Ronald Alesky, died at the age of 23, in a
tragic house fire in 1987, three weeks before my wedding. Ronnie, as he was
known to my family and friends, was the usual God's gift to everyone who came in
contact with him. Ronnie had a knack for creating laughter that came from deep
one Thanksgiving dinner at my parents house, my brothers, my cousins, and I were
all sitting at our own table enjoying a delicious traditional dinner, when my
brother Ronnie broke into one of comedic acts. As we were all stuffing our faces
and sipping on our drinks, Ronnie continued with one of his best routines to
date. Food was falling out of our mouths and drinks were being spit across the
table and out of noses as we laughed uncontrollably. It was the most horrific
and disgusting moment ever in the Alesky household, and it just fueled the fire
for Ronne to continue his comedic rampage. After 15 minutes or so of hysterical
laughter, the fun finally ended when my older bother Ray leaned back in his
chair to catch his breath, and then fell forward with all his force right on to
my cousin's big toe. The scream could be heard for miles. After the dust
cleared, we had one broken toe, a table full of regurgitate food, and thousands
of tears of laughter. Although concerned, Ronnie just sat there with his usual
smug smirk, "made you laugh," look on his face.
our families get together we still talk about that day and it still makes us
laugh. We all loved Ronnie for his humor, bologna sandwiches, Beatles music
playing throughout the house, and most importantly, his unconditional
The My Great Story campaign has
had some exciting new placements across various media this month!
In Albuquerque, NM, My Great
Story author Rebecca Johns' submission was
was featured on the New
Mexico Kids family magazine Facebook page.