National Down Syndrome Society

We get editorial support from Anne-Marie Baldonado, Antonia Acatunde, and Rekha Murthy.

Special thanks this week to Bryn Gillerow, and Taylor Shields at the Global Down Syndrome Foundation, and to Colleen Hatcher at the National Down Syndrome Society.

And as always, here at The Longest Shortest Time, we are looking for your stories.

This week, we're asking for something pretty fun.

To show the world that people with Down syndrome have a place in this world.

And I've really had the amazing support from the National Down Syndrome Congress in DSC and National Down Syndrome Society in DSS, my friends, my family, and my

running coach.

That's incredible.

It's called Assume I Can.

So it was in partnership with the National Down Syndrome Society.

And we were celebrating artists with Down syndrome.

We exhibited over 50 different artists from 19 different countries and over 200 pieces of artwork.

It was actually right around the buddy walk.

I don't know if you're familiar, but for those listening, The National Down Syndrome Society hosts the nation's largest walk around Down syndrome and Down syndrome awareness.

It was this year, September 12th in Central Park in Times Square.

And so we were their opening show for the weekend.

And then if they wanna find local ones-

So if you put in Buddy Walk, the, the National Down Syndrome Society, um, NDSS I think has it on there, but if you put in Buddy Walk-

Okay

... it's gonna come up.

Uh, some of the national organizations in their newsletters do put out research, um, research opportunities, so that, um, is always a good place to start.

National Down Syndrome Society, National Down Syndrome Congress, so.

Yeah, yeah.

And, and when you said PI, you're thinking, uh, not private investigator, but w- the w- what's the PI stand for?

... that says, "Oh, no, you don't need this, and there's no evidence for this." And so in this area of information overload, it's really hard to know, where can I get trusted information? And that's where I always go back to my big trusted, um, national Down syndrome organizations that really are able to walk that balance between being the recipients of lots and lots of information and lived experience from people with Down syndrome and their families, and also partner closely, um, with clinicians and researchers and scientists to then be a bridge between the, the family experience and, and what's out there i- in the research.

Um, so National Down Syndrome Congress, National Down Syndrome Society, Global Down Syndrome Foundation, what a catalyst for research and medical knowledge, uh, the Down Syndrome Research Foundation in Canada, Down Syndrome Diagnosis Network, that does such a good job connecting families while also sharing information, um, about Down syndrome and medical, uh, issues that we encounter.

I, uh, that's where, what I lean on, because they're not influenced by politics.

They are n- uh, they are receiving the parent perspective, and have the b- the wellbeing of people with Down syndrome in their mission statement, and also have consistently collaborated with the science world to bring all the innovation and all of the best practices to the families.