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National Down Syndrome Society E-Newsletter
November
2011
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Join NDSS for
the Buddy Walk® on Washington
February 29 and
March 1, 2012
The Buddy Walk® on Washington is an annual
two-day advocacy experience, which brings the Down syndrome community together
to advocate for public policies that impact the lives of people with Down
syndrome and their families. Participants come face-to-face with members of
Congress and their staff to encourage them to advance education, research and
healthcare for people with Down syndrome. Attendees will participate in an
interactive advocacy training, attend a celebration and advocacy awards dinner
and spend a day on Capitol Hill. The experience is perfectly suited for
self-advocates, family members, professionals, affiliate leaders and members,
and anyone else who wants to make a difference for people with Down
syndrome.
This year, NDSS has partnered with Down Syndrome Affiliates in
Action (DSAIA) to bring all DSAIA conference attendees to the NDSS Buddy Walk®
on Washington. DSAIA and NDSS are holding the annual events concurrently in
2012, 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.
Click here to learn
more.
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NDSS National Policy
Center Update
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New
Virginia Governmental Affairs Committee Organized
The
NDSS National Policy Center team joined with leaders from five affiliate groups
in Richmond, Virginia
in a training conference to develop a Governmental Affairs Committee (GAC)
focused on improving public policy for individuals with Down syndrome and their
families in the state. The Down Syndrome Associations of Fredericksburg, Greater
Richmond, Hampton Roads, Northern Virginia and Roanoke agreed to formalize a
coalition and determined policy priorities.
Click here for
more information about NDSS Governmental Affairs Committees.
U.S.
Congressional Down Syndrome Caucus Briefing
A
briefing for the U.S. Congressional Down Syndrome Caucus on Down Syndrome
Research was organized by Congresswoman Cathy McMorris Rodgers. The briefing was
intended to assist the Congressional Down Syndrome Caucus in developing policy
priorities. Presenters focused on the unique biology of Down syndrome, current
research efforts in Down syndrome (including the National Institutes of Health,
NIH, and privately funded efforts) and barriers to Down syndrome research. One
theme underscored by several presenters, including NDSS National Policy Center
Director Madeleine Will, is that infrastructure tools, such as a Down syndrome
patient registry and biobank, are required to leverage research that will
benefit people with Down syndrome and the general public.
First
Meeting of the National Institute of Health (NIH) Down Syndrome
Consortium
An
historic first meeting of the Down Syndrome Consortium recently took place in
Washington, D.C. The Consortium was created to facilitate discussions regarding
Down syndrome research and provide for ongoing implementation of the long-range
NIH Down syndrome research plan. Since NDSS sponsored a roundtable on Down
syndrome research in 2010, NDSS has pursued the creation of a public/private
entity focused on Down syndrome. The Consortium is sponsored by NIH's Child
Health and Development Center (NICHD) and comprised of approximately two dozen
representatives of Down syndrome stakeholders groups, such as researchers and
other experts in the field, family members, self-advocates, leaders of
professional Down syndrome organizations and members of the Trans-NIH Down
Syndrome Working Group. NDSS President
Jon Colman attended the meeting and will represent NDSS as a key stakeholder in
the Down syndrome community. When asked about the meeting, Colman praised the
leadership of NICHD for its commitment to developing the infrastructure
necessary to strengthen Down syndrome research. He indicated that he was pleased
to be named chair of the Contact Registry Subcommittee and eager to begin
examining ways of organizing such a registry - a voluntary list of people who
are interested in being contacted to participate in
research.
Click here to
see the NICHD press release.
Tips
to Protect Students With Disabilities in Waiver Requests to the U.S. Education
Department
At
the end of September, the U.S. Department of Education announced its program to
allow State Education Agencies (SEAs) to waive key requirements of the
Elementary and Secondary Education Act (ESEA - formerly the No Child Left Behind
Act, NCLB). These waivers could have a potentially devastating effect on the
degree to which states, schools and districts are held accountable for the
academic achievement of students with disabilities. The key to protecting these
students is to have input in the development of the state Flexibility Request in
which the waiver terms are described. SEAs are required to consult with
stakeholders, which would include organizations representing students with
disabilities. In order to help these
organizations with this consultation, NDSS, together with The Advocacy
Institute,
has developed a document that provides tips for providing input on the Flexibility
Request.
Click here to
view the document.
Elementary
and Secondary Education Act (ESEA - Formerly No Child Left Behind)
Bill
On
October 11, Senator Tom Harkin (D-IA), Chairman of the Senate Health,
Educations, Labor and Pensions Committee, posted a draft bill amending
ESEA/NCLB. We were pleased that the
National Universal Design for Learning (UDL) Task Force, chaired by NDSS, was
successful at incorporating numerous provisions promoting UDL in the
bill. However, there were still serious issues with the bill regarding
the elimination of federal mandates for measuring student achievement and
interventions in 95% of the nation's schools, the lowering of standards for
highly qualified teachers, and the inclusion of harmful provisions governing
Alternate Assessments on Alternate Academic Achievement Standards (AA-AAS). We
expressed our concern about the first two issues in letters from the coalitions
to which we belong.
In addition, NDSS worked closely with Senator
Harkin's staff to make some important changes to the draft bill, which
specifically relate to students with intellectual disabilities, before he
offered it to the HELP Committee for "mark up" (a process by which the Committee
makes any additional amendments). As a result of this advocacy, the bill
considered by the Committee requires parent involvement in determining who will
take an AA-AAS, ties the AA-AAS more closely to access to the general education
curriculum, and requires universally designed regular assessments so more of
these students do not have to take the AA-AAS. In spite of these changes, NDSS still had
serious enough concerns about this version of the bill to sign on to a statement
that we cannot support the bill at this time.
Click here to
view the statement.
On
October 20, the HELP Committee passed the ESEA (formerly NCLB) Reauthorization
Bill with a number of amendments. Fortunately, the Isakson amendment, which
would have lifted the cap on the use of alternate assessments, was defeated with
the help of all those who responded to the NDSS action alert. However, an
amendment on highly qualified teachers that we opposed because it loosened
teacher preparation requirements was passed and one that we supported was
defeated. The NDSS National Policy team will review the Committee bill in its
entirely once it is posted online. A number of amendments to the ESEA were
accepted by the HELP Committee. These must be analyzed carefully to understand
their full implications. Earlier reviews suggest that several of them will do
harm to students with intellectual disabilities, and our overall concern remains
that the bill may codify low expectations for students taking alternate
assessments.
Collaboration
to Promote Self-Determination Coalition
The Collaboration to Promote
Self-Determination (CPSD), a coalition that NDSS co-founded, continued to meet
with members of the joint House and Senate "Super Committee," which is
attempting to reach an agreement on deficit reduction and other important fiscal
matters. The ideas for which CPSD representatives advocate are receiving
careful and serious consideration in these meetings. CPSD calls for holistic
reform of the adult system of supports and services for individuals with
disabilities, particularly intellectual disabilities. Changes CPSD seeks
include: giving parents and individuals with disabilities like Down syndrome the
ability to control the public resources they receive from different programs in
ways that result in employment at minimum wage or better and independent living;
and embedding Employment First principles and language in key laws like Medicaid
to ensure that public dollars are used to reimburse provider agencies that place
people in employment at a higher rate than those who place people in sheltered
workshops at subminimum wage.
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Sign
up to Receive Important Policy Action Alerts
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Be an Advocate!
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 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
Center. |
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New Prenatal Test for
Down Syndrome
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On October 17, a new prenatal screening test,
MaterniT21, was made available by the company Sequenom.
Click here for more
information on this and other prenatal tests.
This new prenatal test for
Down syndrome hit the market in 20 cities nationwide, which promises to deliver
the most accurate and earliest probability assessment of a positive diagnosis
for Down syndrome in a pregnancy. NDSS has updated its information for families
and experts based on this new development to include criteria to evaluate
companies with non-invasive prenatal diagnostic tests for Down syndrome. NDSS
appreciates that these tests are likely to be safer for pregnant women than the
current invasive options of chorionic villus sampling and amniocentesis.
However, before these new tests are made commercially available, companies
should first meet certain criteria to ensure that all doctors and expectant
parents receive up to date and accurate information about the test and its
results.
Click here to read more about
these criteria.
On November 2, NDSS will join Down
Syndrome Affiliates in Action (DSAIA) in hosting a webinar titled The Impact of
New Prenatal Screening at 1:00pm ET. NDSS National Policy Center Director
Madeleine Will, NDSS Board Member Dr. Brian Skotko and DSAIA Informed Decision
Making Task Force Chair Mark Leach will present information about the new test,
how and where it is currently being administered, the efforts happening at the
highest level of government and resources available to keep you informed and
inform others.
Click here for more
information and to register.
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Support
NDSS Through Twibbon
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Show Your Support with the NDSS Twibbon!
Over 400 people have added the NDSS pic-badge to their profile
pictures on Facebook or Twitter! By adding the badge, also known as a Twibbon,
they are supporting NDSS and raising awareness for people with Down syndrome to
all who see their profile pictures.
Click here to view a selection
of recent supporters of the NDSS Twibbon and to add it to your profile
picture. |
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Buddy Walk®
News
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National Buddy Walk® Program and to find a local Walk in your area visit www.buddywalk.org.
Buddy Walk Success
Stories
Each Walk has its own unique story to tell and leaves indelible
memories on their participants. Over the next few months, we will be sharing
Buddy Walk success stories. Our first story is one of the Opheim Buddy Walk in
Opheim, Montana. It was organized (in a very short period of time) by Janet
Bailey and Sally Fuhrman. Here is what they had to say about
it:
"Opheim held its 1st Annual Buddy Walk on Wednesday, October 12, with
78 people taking part in the Walk. The Walk started in front of the Opheim High
School where almost all of the 45 enrolled students and 11 teachers and
administrators joined 26 people from this community for the one mile walk around
the perimeter of the town. This was a very good turnout as the population of the
entire town of Opheim is only 80.
One person said that the smiles on the faces of those four individuals
with Down syndrome made the Walk worthwhile.
There are only four other Buddy Walk events in Montana. They were in
Great Falls, Billings, Missoula and Bozeman, the four largest cities in the
state of Montana. We were excited to bring the Buddy Walk to our small town and
look forward to making it a bigger event next year."
To have your Buddy Walk success story included in an upcoming
e-newsletter, please click here to email it to Becky Switalski,
National Buddy Walk Director - and don't be afraid to brag!
Buddy Walk Firsts
 2011
marked some very unique happenings at local Buddy Walk events. In Villanova,
PA,
the Children's Hospital of Philadelphia's 10th Annual Buddy Walk and Family Fun
Day featured an ice sculptor who created a beautiful work of Buddy Walk art out
of a block of ice.
The
10th Annual Manasota BUDS Buddy Walk in Bradenton, FL celebrated the Buddy Walk
in a big way - by hiring a skywriter to write the words "Buddy Walk" in the sky
prior to the event. Looks like a picture perfect day!
Have
a first of your own to share? Click here to tell us about
it!
2012
Buddy Walk Conference
The 2012 National Buddy Walk Conference
will be co-sponsored by the Massachusetts Down Syndrome Congress. Stay tuned
next month for a save the date and more information on our 4th annual
Conference. We'd love to hear your thoughts on what you'd like to see included -
click here to share your
ideas.
Stay Connected
NDSS has many ways to stay
up to date on all the latest Buddy Walk news: on Facebook, Twitter and the Buddy Walk blog. Thank
you to everyone who has shared your photos and highlights and with us. We look
forward to receiving more! If you have suggested topics for the Buddy Walk blog
or would like to be a guest blogger, please click here.
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My
Great Story Buddy Walk Section!
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The Buddy Walk® is a great time for bringing families,
friends and communities together to raise awareness for the acceptance and
inclusion of people with Down syndrome. The My Great Story campaign's Buddy Walk
section is the perfect way to share your Buddy Walk experience with other
walkers and those who couldn't make it in person.
The Buddy Walk blog
posts stories from the My Great Story campaign on Buddy Walk Wednesdays - share
your story for a chance to be featured! Click here to check out the
Buddy Walk blog.
Click here to visit the My
Great Story public awareness campaign and to share your story.
Buddy Walk Organizers:
Click here to download the My
Great Story Buddy Walk flyer to distribute at your Walk and encourage your
participants to share their stories! |
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Buddy
Walk® in the Media
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Many local Buddy Walk® organizers do a great job of reaching out
to their local media outlets and getting coverage for the Walks. We do our best
to track all of these placements and they're always great to see! Please click
here to contact NDSS Communications Associate
Jordana Stern to share a local article or segment from you Walk.
NDSS works with national media outlets to spread the word about
the Buddy Walk program, especially during Down Syndrome Awareness Month. Here
are some of the outlets that covered the National Buddy Walk Program:
About.com included BuddyWalk.org as its site of the day in its
Children
 With Special Needs Section.
Click here to view the
post.
Bella Online covered the Buddy Walk in its Children with Special
Needs
Site.
Click here to read the
article.
Parents Magazine's Kara Corridan wrote an article about the Buddy
Walk and her uncle, NDSS Goodwill Ambassador Chris Burke!
Click here to read the
article.
Mothering Magazine posted about the Buddy Walk on its
Facebook
page.
Click here to view the
post.
Modern Mom Magazine interviewed Chris Burke and wrote about his
involvement with the Buddy Walk. 
Click here to read the
interview.
USA Today highlighted NDSS' Down
Syndrome Awareness Month initiatives, including the Buddy Walk, in its Charity
Spotlight Section.
 Click here to view the ad as
posted on our Facebook page.
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Fundraiser
Focus
NDSS
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.
Cooper Classic
In
the summer of 2010 Lawrence Goldstein and his wife, Lindsay Heit, let us know
that they were planning a fundraiser for NDSS in honor of their nephew, Cooper,
who was five months old and lived in a different city. They wanted Cooper and
his family to know that he is valued and loved, and they also wanted to raise
awareness about Down syndrome among their friends and colleagues.
Lawrence
and Lindsay planned the Cooper Classic, an October softball tournament in New
York City's Central Park and raised over $5,000. As we got to know them during
the planning process, we admired their commitment to making sure that Cooper is
given every opportunity to enhance his quality of life and become a valued
member of our society. It is because of this that we selected Cooper, his
parents, Tabitha and Jeremy, and his brother, Reece, to star in the NDSS
production, Milestones.
One
year later, Lawrence and Lindsay planned the second annual Cooper Classic
setting their goal $1 higher than they raised in 2010y. They blew past it -
raising nearly $8,000 this year!
Since
Lawrence and Lindsay's first child is due on December 21, they decided to
include a "baby pool" as part of their fundraising efforts. They charged $5 per
entry and 182 guesses were submitted - date, time, gender - half of the money
raised from each entry will be donated to NDSS. In addition, any donation over
$5 will go directly to NDSS. This innovative idea increased their number of
donors from 115 to nearly 300 people.
Please
join us in recognizing the tremendous motivation and commitment of Lawrence
Goldstein and Lindsay Heit, the co-founders of the Cooper Classic. And, please
join us in wishing them well as their family grows.
Click
here to view their
fundraising page.
Click
here to learn more about
planning your own fundraiser.
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Shop NDSS: Rhyme &
Reason Clothing
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NDSS
is proud to partner with Rhyme & Reason, a Connecticut based company that
believes a percentage of everything we purchase should be donated to a charity
of our choice. At Rhyme & Reason, instead of spending a lot on celebrity
endorsed marketing campaigns, they concentrate on making high quality clothes
with minimal branding and allow their customers to give back to society by
donating a percentage of each purchase to the charity of their
choice. They had us at "hello." We wish more companies felt this
way! To kick off this Shop NDSS partnership, Rhyme & Reason chose to
give NDSS a $4,700 contribution. They felt the gift to NDSS could make a
meaningful impact. It was made in support of all they had learned about people
with Down syndrome in many conversations with NDSS. We are honored! Rhyme
& Reason clothing can only be purchased online. At the checkout, select
National Down Syndrome Society and 10% of your purchase will be donated to us.
Customers that use the code NDSS15 will receive 15% off their purchase and free
shipping from now until the end of the year. New products will be added
to the collection over time and stay tuned for a signature NDSS t-shirt that is
coming very soon! Click here to visit the Rhyme
& Reason website. Click here to visit Shop
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Come Together for a Cause
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NDSS is seeking people
from across the country to join us in an effort to plan multiple events in
multiple cities on Wednesday, March 21. We have chosen this specific date
because it not only provides you with plenty of time to prepare, but it is also
World Down Syndrome Day! Some of the events that are in the works
are:
- In New York City,
our Young Leadership Committee will be hosting a bar party to raise money for
NDSS. The 2011 NDSS Times Square Video will be played on all of the screens in
the bar during the party.
- NDSS VP of
Marketing Julie Cevallos is going to bring cupcakes decorated with yellow and
blue M&Ms to her daughter Nina's class in Connecticut.
- Florida mother of
three, Shannon Blaeske, established an online campaign in honor of her daughter
Fiona - titled the 3.21 Project. She set up a fundraising page with NDSS and
promotes it on her blog. She is also currently putting together a golf outing
for March 21 in southwest Florida.
Consider starting an event in your area in
honor of World Down Syndrome Day and raise money for NDSS - be creative! Click
here to contact
NDSS VP of Development Pam Sandonato 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.
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Scholar
Spotlight
Each
year NDSS awards postsecondary scholarships to students with Down syndrome
through the Joshua O'Neill and Zeshan 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 Joshua O'Neill
Zeshan Tabani Enrichment Fund were invited to write about their experiences as
students.
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Marissa and her instructor, Matt Dostal
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Marissa
Erickson, a 2011 Joshua O'Neill and Zashan Tabbani Enrichment Fund recipient, is
20 years old and lives in Alameda, California. Marissa attends her local school
district Adult Transition program. She also has the opportunity to attend
college classes at the local community college to continue building her academic
skills. Marissa works at the local movie theater, volunteers in a high school
special day class and participates in Special Olympics. Her true passion in life
is in the creative arts. She loves dancing, singing, drama and painting. Marissa
was thrilled to be one of the recipients of the Joshua O'Neill and Zeshan Tabani
Fund grant. She is using the funds to attend a wonderful art studio called
Creative Growth. At the studio, she works side by side with artists and has the
opportunity to explore different art mediums. Her teacher, Madelyn Covey, says,
"Marissa is energetic, enthusiastic and adventurous. She is a prolific artist
and open to new ideas and new mediums. Marissa is a wonderful artist and a great
student." What Marissa loves best about the art studio is that they have many
art shows throughout the year that display all the art creations and list it for
sale. She says, "I love when people come and see my art. My art is a part of me
and they can buy it from me."
When
she is not at the art studio, Marissa enjoys taking keyboard and singing
lessons. She is also in a drama group and will play the part of Belle from "A
Christmas Carole." Marissa also helped start, and is a moderator for, an online
fan club for James Durbin from American Idol. She says, "He is a hero to me and
makes me want to sing."
Her
future plans include attending post-secondary education at Fresno State
University in the Wayfinders Program. Marissa looks forward to living in student
housing, attending football games and continuing her love of the Dramatic Arts
by taking art, dance and public speaking classes.
Click
here to watch Marissa in
a short documentary that was filmed over the summer at Creative Art Growth
Studio.
Click
here to
learn more about the Joshua O'Neill and Zeshan Tabani Enrichment Fund.
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Remembering Dr. Allen
C. Crocker, NDSS Honorary Board Member
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Allen Carrol Crocker, M.D., 85,
of Natick, MA (and Gloucester, MA) passed away peacefully on Sunday October 23,
at Newton/Wellesley Hospital from respiratory failure, several months after
surgery to treat a non-malignant brain tumor.
Beloved husband of 58
years to Margarete Crocker of Natick (and Gloucester); devoted father to Elli
Crocker Morse and her husband, John Morse, of Newton, MA, Philip Crocker and his
wife, Nina, of Irving, TX, and Monica Doyon and her husband, David, of Oxford,
MA. He was so proud of his nine grandchildren: Rita, Sonya, and Irene Crocker;
Kelsey, Ethan, and Chloe Doyon; and Alexander, Brittany, and Evan Morse. Allen
also leaves many extended family members in Germany and England and elsewhere in
the U.S.
Allen was born on Christmas Day, 1925, in Boston, MA, to Ernest
and Frieda Crocker. He was a graduate of Belmont High School, M.I.T (1944), and
Harvard Medical School (1948). He served in the U.S. Army Medical Corps as a
first lieutenant and captain from 1951-53 and was stationed in Nurnberg,
Germany. It was there he met his wife, Marga.
Dr. Crocker began his
clinical training in pediatrics at Children's Hospital in Boston in 1948 and
continued in his medical practice at the hospital until his retirement in June
2009. He was director of the Developmental Evaluation Clinic from 1967 - 1993
and Program Director of the Institute for Community Inclusion from 1993 - 2009.
He was a pioneer in the field of developmental pediatrics. He wrote scores of
articles and book chapters on genetic diseases and developmental disabilities,
and co-authored and edited several seminal books in the field:
Developmental-Behavioral Pediatrics (now in its 4th edition), Medical Care for
Children & Adults with Development Disabilities (now in its 2nd edition),
and HIV Infection and Developmental Disabilities. He was a Senior Associate in
Medicine at Children's Hospital from 1966 - 2009. In addition to his clinical
practice, he was Associate Professor of Pediatrics at Harvard Medical School and
Associate Professor of Society, Human Development & Health at Harvard School
of Public Health. He cherished his role as teacher and mentor.
Dr.
Crocker served on several editorial boards for publications such as the Down
Syndrome Quarterly and the Journal of Religion, Disability, and Health; as well
as sitting on the boards of many non-profit agencies and consumer groups
including the Boston College Campus School, Ironstone Therapy, Inc., National
Down Syndrome Congress, National Niemann-Pick Disease Foundation, and National
Tay-Sachs and Allied Diseases Association. He also was on several advisory
councils for state agencies including the Bureau of Family and Community Health
(Dept. of Public Health) and the Governor's Commission on Mental Retardation. He
was the recipient of numerous lifetime achievement awards and several awards are
named in his honor (e.g. the Allen C. Crocker Award is given at each annual
meeting of the New England Regional Genetics Group and a similar award is
presented through the Massachusetts Down Syndrome Congress each year).
Allen was a lover of poetry, art, music, literature, oysters, wine, and
nature (he could identify almost every native plant, marine invertebrate, and
insect species) - and he liberally shared his passions with others. He found
comfort and peace sitting on the deck in Gloucester with a view of Niles Pond
and Brace Cove. Allen's lifetime motto (taken from his days as an Eagle Scout)
was, "Leave the campsite better than you found it." This he certainly did. The
world is better for his presence.
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My
Great Story of the Month Contest
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Congratulations to RuLinda
Krasovic, Denison, TX, on winning the My Great Story of the Month Contest!
RuLinda's story received the most votes in October, and she will be receiving a
beautiful collection of B. toys! In November, 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! Click here to share your
story.
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.
Click here for more
information about ShoeBuy. |
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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.
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World
Peace
RuLinda Krasovic
Denison,
Texas
 Rylan Blaise came into our lives 13 months ago, but we can't remember
life without him. I'm the honorary step-grandmother of Rylan, who has Down
syndrome, and along with my husband, daughter, two sons, Rylan and his mother,
we make an interesting bunch. He came from an unplanned pregnancy to a young
single mother. Each day brings more joy and love, which is given abundantly from
him. As he is learning to army crawl, point to his nose, sign "more," "eat" and
"all done," he always stops to dance, laugh and give kisses. His smile lights up
a room! When we are out in public his personality is contagious. He makes
everyone smile and laugh. On a recent trip to the grocery store my youngest son,
was waiting with Rylan on a bench while I shopped. When I finished and was
approaching them I couldn't help but notice an elderly man sitting next to them.
He was watching Rylan and my son interacting and the joy on this man's face
brought tears to my eyes. It lit up his entire face, his eyes were so bright!
This is the effect one little boy has on so many people. As we were leaving my
son, who is 15, said, "Everyone should have a Rylan, he would bring world
peace." I couldn't help but to agree.
Ethan's Entourage
Erica McCormick
Fort Dix, New
Jersey
Congratulations, Erica, for submitting this
month's
top voted story in the Buddy Walk
section!
 I am a mother of a 6 year old boy named Ethan who has Down syndrome.
When he was born we did not know he had Down syndrome until a few hours after he
was delivered the doctors came in and told me; my response was "special babies
were born to special people." He puts a smile on everyone's face that he meets.
He brings out the good in people and inspires me to be a better person and
mother to him. Life can be challenging at times but it only makes us stronger.
He is a funny, animated, charismatic, enthusiastic little boy! I feel Ethan was
sent to me for a reason, he changed my life for the better and he has touched
all of our families and friends lives as well.
We just had our Buddy Walk in
Pennsylvania on Sunday. The only way to describe this day is AMAZING! The group
that came out to support my son and my family was almost 200 people! Words
cannot even describe the feeling I have that so many people were gathered there
for Ethan. To know, that almost 200 people were there for my son is a blessing.
I could not be any happier with the outcome of the day. The support we have for
Ethan from family and friends is overwhelming. I am so thankful to everyone that
took time out of their day to spend it supporting Down syndrome.
The meaning of the word Buddy
Walk to me means togetherness. Everyone there that day was there because of
their special buddy whether it was Ethan or another person who has Down
syndrome. I want to thank the Buddy Walk for having such a wonderful event where
we can all go out and support our loved ones. All in all, I am very lucky to
have been blessed with a child with Down syndrome and I would never change that
for the world. He is destined to do great things and I will be right next to his
side the whole way!
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My
Great Story
in
the Media
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The My Great Story campaign has
had some new placements across various media this month!
In Montana, Apostrophe Magazine,
a publication written by, for and about people with developmental disabilities,
covered the Buddy Walk section of
the My Great Story campaign.
Click here to read the
article, which is found on page 29 (and look for the My Great Story ad, The
Traveler, on page 45).
On Blog Talk Radio, Joy Keys interviewed NDSS VP of Marketing
Julie Cevallos and NDSS Board Member Brian Skotko about My Great story and other
Down Syndrome Awareness Month initiatives.
Click here to listen to the
interview. 
Parenting Magazine gave a shout-out to My Great Story on their
Facebook page. 
Click here to view the
post.
NDSS would like to extend a
special shout out to everyone who blogged, posted and tweeted about the My
Great Story campaign this month. Here are a few of those who did:
Thanks for all of your support
and continuing to spread the word!
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Social
Media
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To
keep up with the latest NDSS news and create some buzz:
Click here to become a fan of
the NDSS Facebook page.
Click here to become a fan of
the Buddy Walk® Facebook page.
Click here to follow NDSS on
Twitter.
Click here to follow the Buddy
Walk on Twitter. |
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Beginning in January, the DSASG Planning Committee will start meeting once a month to plan out the year for our group. Different topics to cover include advocacy, fundraising, events and outreach. If you would like to be a part of Planning Committee please feel free to join us. We are looking for someone to head up each area or volunteer your time with one of the areas you feel pulled to. The meetings are tentatively scheduled for the first Thursday of the month. Our regular monthly meeting will be January 14th at First Christian Church. Further details about a speaker and topic to be announced. 
Connecting to
Facebook
When we asked the members of the Two Little Hands
Productions staff what Signing Time products they bought for their friends and
families, we got some surprising answers. 
