Category Archives: Down syndrome organizations

What would you talk to your Congressional leaders about if you had the chance?

There are two events coming up, at the end of March/beginning of April, that are aimed at advocacy in the disability and Ds community and meeting with Congressional leaders on The Hill.  The first is the 2017 DISABILITY POLICY SEMINAR (DPS), a 4-day event (March19-22) hosted by: American Association on Intellectual and Developmental Disabilities (aaidd), The Arc, Association of University Centers on Disabilities  (AUCD), National Association of Councils on Developmental Disabilities (NACDD), Self Advocates Becoming Empowered, and United Cerebral Palsy.  The second, is the annual Buddy Walk on Washington (BWW) (April 4-5) hosted by the National Down Syndrome Society (NDSS). Continue reading What would you talk to your Congressional leaders about if you had the chance?

#CountUsIn – Co-presenting with NIH on #RaceAndDs

racial disparities exist

For me, the highlight of this weekend’s Down Syndrome Affiliates in Action (DSAIA) conference was the presentation is was honored to co-present.  For the first time in 18+ months since I first wrote about the racial health disparities that exist in the Ds community, I felt like we might be moving forward.

Continue reading #CountUsIn – Co-presenting with NIH on #RaceAndDs

Phoenix Recap – NDSC15

By: Stephanie Holland
This year the annual NDSC convention was held in sunny Phoenix, Arizona.  The 100+ degree weather made things outside of the conference venue a bit sticky, but inside everything was “cool.”  If I had to sum up my own experience this year I would use these three words: collaboration, friendship, and hope.
As you can see from the picture above, our table in the exhibit hall Stephanie Holland, Mardra Sikora, & Jennifer Smolkadid triple duty this year – Jennifer Smolka was gracious enough to
share her spot for 321 eLearning with The Road and Marianne from Joey’s Ups with Downs. We all w
ork together throughout the year on webinars and the 321 eConference, and at the NDSC gathering we got to work side by side.
Jennifer, Marianne, Mardra, and I got to be all together in person for the first time!

Continue reading Phoenix Recap – NDSC15

R – Ruby’s Rainbow – Help From Our Friends

By: Liz Plachta – Co-founder of Ruby’s Rainbow

Ruby's Rainbow on The Road We've Shared“Together we can do so much.”

That should be the Ruby’s Rainbow mantra. In fact, in thank you’s, Facebook post and everything in between I have many times used the quote from Helen Keller “Alone we can do so little; together we can do so much.”  I believe this with every fiber of my being…and have seen it first hand in our organization.  Let me back up a little…

Continue reading R – Ruby’s Rainbow – Help From Our Friends

Quality of Life – Global Down Syndrome Foundation

by Michael Bryant of Global Down Syndrome Foundation with a few notes by Mardra Sikora

“Learn from yesterday, live for today, hope for tomorrow.” – Albert Einstein

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As recently as 1983, a person with Down syndrome was barely expected to live into adulthood. Three decades later, most of the people living with Down syndrome are adults, and have the potential to live long lives, with many expected to live to 55, 60, and beyond.

These facts are a source of pride for the Down syndrome community, reflecting how far we’ve come in so short a time. The reasons behind the dramatic increase are many, and they each show a major step forward:

Continue reading Quality of Life – Global Down Syndrome Foundation

P is for Phoenix – NDSC

P is also for “people” and “professionals”

By Sue Joe of the National Down Syndrome Congress

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Phoenix is the host city for his year’s NDSC Convention in June, and it’s where we’ll be bringing together people (that’s you!) and professionals in the Down syndrome world, and let the learning begin. Really, there is nowhere else on earth that you can get this kind of opportunity for education and sharing under one roof. 

And since the P in Phoenix also sounds like F, let’s go ahead and make the leap that P is for Families!

Continue reading P is for Phoenix – NDSC

N  is for National Advocacy

National Advocacy on The Road We've SharedAdvocacy can take many forms, from simple things like being out in the community every day so people have a chance to see and interact with someone who has an intellectual and/or developmental disability, to more complicated issues that require expertise and legislative action.
Today we’re looking at how advocacy plays out on a policy level and how The National Down Syndrome Society plays an important role in creating change at the federal and state level.

Continue reading N  is for National Advocacy

M is for Mosaic Down Syndrome

By: Brandy Snow and Stephanie Holland
A to Z Blogging Challenge on The Road We've SharedHave you heard of Mosaic Down syndrome but wondered what it was or how different it is from Trisomy 21?Has some one asked you if you can have “a little bit” of Down syndrome?

We learned about mosaicism at the 321eConference and we asked our friends at IMDSA to share some of that information with our community.President Brandy Snow tells us what mDs is and how IMDSA helps “Unite unique people in a unique world.”

Continue reading M is for Mosaic Down Syndrome

Local!

Everything Starts at Home

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 This week there is the Buddy Walk on Washington.  Big things are being done on the big stage.  But, what’s happening at home in your town? The local groups have their feet on the ground, working for the families of their community, helping, teaching, and reaching out.
As an example, let me tell you about the Ds group in my city, the Down Syndrome Alliance of the Midlands. As of two years ago I knew nothing, really, about what they do. So I called and…

Continue reading Local!

I is for IDSC Facebook Groups

By: Beth Sullivan and Stephanie Holland
I for IDSC Facebook Groups on The Road We've SharedWhile we’re talking about collaboration in the Down syndrome community, we have to highlight how social media has made it much easier for individuals to reach out to others in similar situations.  The International Down Syndrome Coalition (IDSC) has created the space for us to do just that!
We asked IDSC Chairman, Beth Sullivan, to tell us a little bit about one of the unique strengths of IDSC: their Facebook groups.  Thanks Beth!
The International Down Syndrome Coalition (IDSC) supports families with a loved one with Down syndrome in every step of their journey – from conception and throughout life.The IDSC understands the many emotions and thoughts that families with a new diagnosis may be experiencing. We are here to offer support, guidance and connections to other families that are now, or who have recently, gone through the same emotions and thought processes. Families with a new diagnosis, please keep in mind – you are not alone. This new journey will bring some challenges as well as much love and excitement. The IDSC is here to support you every step of the way.

Continue reading I is for IDSC Facebook Groups