DownSyndrome Achieves

05/12/2026

We've made an important step forward here at DownSyndrome Achieves.

We’re proud to announce a new research partnership with Children's Hospital Los Angeles focused on neurological health in individuals with Down syndrome.

For families and caregivers, work like this matters because it helps move the field toward earlier insight, better understanding, and better long-term care for individuals with Down syndrome.

We’re grateful to collaborate with researchers and institutions committed to advancing understanding and improving outcomes for our community.

More to come as this work moves forward.

04/23/2026

For the first nine years of his life, Lito’s son, Cal, had endured nine major surgeries.

At just 4 months old, he underwent an 11-hour open-heart surgery.

There were countless hours spent in hospital waiting rooms.

And in those quiet, anxious moments, one question kept surfacing…

👉 “What was being done for Down syndrome research?”

With Lito’s background in politics and the pharmaceutical industry, he didn’t just ask questions. He started searching for solutions.

What he found at that time was unacceptable.

As of 2014, Down syndrome research had received 4x less NIH funding than other conditions with similar prevalence, like Multiple Sclerosis.

Researchers had been expressing a clear need for more biospecimens to launch studies.

But no one had taken on the challenge of building a national biobank for Down syndrome.

So what happened?

Lito created DownSyndrome Achieves in 2011.

And the DSA Biobank was born.

It continues to be a critical, national resource for accelerating life-changing research for people with Down syndrome.

This is what happens when turning a challenging time into purpose.


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At DownSyndrome Achieves, we’re working to bridge the gap between families and researchers—because every person with Down syndrome deserves access to better care and healthier outcomes. By bringing science and community together, we’re not just advancing research—we’re building a future where individuals with DS can thrive.

04/16/2026

At DownSyndrome Achieves, awareness starts with real stories from real families.

When Lito Ramirez and his wife were expecting their third child, everything seemed routine…

Until tests, conflicting opinions, and uncertainty raised more questions than answers.

At the end of the day, one question remained…

Can we love this child?

The answer was yes.

When their son, Cal, was born, what should have been a routine delivery quickly turned into crisis.

His heart rate plummeted, and an emergency C-section was performed.

For a terrifying moment, Lito stood behind a steel door, wondering if he had lost his wife, his child, or both.

Then came silence.

And then came life.

Cal was born with Down syndrome.

He faced serious medical issues from the very beginning, but he was here.

And that was all that mattered.

For the Ramirez family, what began with fear has become a story of resilience, love, and purpose.

If you’d like to watch Lito share his family’s story in his own words, you can find the video here: https://www.youtube.com/watch?v=UigVpSS6keI&t=4s

When our son was born with Down syndrome, everything that could go wrong did. Nine surgeries followed over the next nine years. What I learned through it all...

04/09/2026

Finding out your child has Down syndrome can catch you off balance.

There’s no denying it.

And we can say that because behind the organization of DownSyndrome Achieves are parents of children with DS.

We remember the exact moment when we were given the diagnosis.

And we’ve been in hospitals more than we like.

Our mission to advocate for Down syndrome research stems from seeing our kids go through very challenging times with associated health conditions.

Because of that, we want to do all we can to supply researchers with the samples they need to discover new treatments and therapies to improve the lives of those we love.

But we can’t do this alone.

You can help us by…

- Contacting us at [email protected] to tell us your story
- Learn more about our organization at dsachieves.org
- Reshare this post to reach other parents with kids with DS

Can you relate to any of this?


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At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.

03/26/2026

You can turn your family’s experience into impact.

If you’re the parent of an adult with Down syndrome, you know something most people don’t.

You’ve walked a road filled with both joys and challenges, which you had to figure out yourself.

Little guidance. Even less research.

But here’s what’s possible now….Your family’s journey could change everything for the next generation.

DSA is helping researchers understand how health evolves across the entire lifespan of individuals with Down syndrome, and this is something that hasn’t been possible before.

You’ve seen the gaps. You know what’s missing.

Now, you can help shape what comes next.

When you help, you’re not just supporting research like Dr. Karamichos’ eye disease study; you’re helping researchers connect the dots between childhood, adulthood, and aging with Down syndrome.

Dr. Karamichos had everything ready for his breakthrough study.

The passion. The expertise. And the research plan.

But for three years, he was stuck.

Because he needed something no university could provide…

Families willing to help.

When he found DSA and connected with parents like you, everything fell into place.
That study?

It's now funded with a $275,000 NIH grant.

Your family could be the key to the next breakthrough.

Your years of experience matter. Your whole family can help. We come to you. And it's always your choice.

This isn’t just research. It’s legacy work.

Your legacy could help other families skip the struggles you've had to figure out on your own.

Ready to turn your experience into impact and be part of something bigger with us?

Contact us today or visit dsachieves.org to learn more.

03/18/2026

Not every family recognizes March 21st that falls at the end of this week.

But in Lito's house, it’s a date that carries real meaning.

March 21st represents 3 copies of the 21st chromosome, the genetic signature of Down syndrome.

And for Lito's family, that chromosome has been a part of a young man they love very much...

Cal.

When Cal was born, the Ramirez family stepped into a world they didn’t fully understand yet. A world filled with questions, medical appointments, unexpected challenges… and a whole lot of caring.

Today, Cal is a young man.

And through organizations like DSA, that journey has grown into something bigger than their family.

It’s become a mission.

A mission to advance research, improve health outcomes, and ensure individuals with Down syndrome have the opportunities they deserve.

So as World Down Syndrome Day approaches this week, you might be wondering:

What can I actually do to support the DS community?

Here are a few meaningful ways:

Share your story if you have a loved one with Down syndrome. Awareness spreads person to person.

Learn about the research happening today. Progress depends on people paying attention and getting involved.

Support businesses that employ individuals with Down syndrome. Your choices as a consumer can quietly expand opportunity.

Consider supporting organizations doing the work, like DownSyndrome Achieves. Even a small monthly gift helps move research and advocacy forward.

If you'd like to support the work at DSA, you can do that here: https://dsachieves.app.neoncrm.com/forms/42

We would be incredibly grateful!

Because while March 21st is one day on the calendar…

For families like Lito's, it represents something much bigger.

A community.
A commitment.
And a future worth investing in.

03/12/2026

Here's something that might surprise you about your family's impact…

It doesn't stop with one study.

Take Dr. Karamichos' breakthrough eye disease study affecting 1 in 3 people with Down syndrome.

He spent three years of searching…

Discovered dead ends everywhere.

Grant applications kept stalling.

And research was ultimately paused.

Science couldn’t move forward because he had yet to find families like yours.

Then he found DSA, and the families who said, “We’ll help.”

That’s when everything changed.

But here’s what’s really amazing…those families didn’t help just launch one study.

Their contribution will spark additional research, new questions, and new possibilities for treatments your loved one might benefit from.

It's like dropping a stone in water, and the ripples keep spreading. And your family could be at the center of that.

Are you ready to create ripples that could change everything?

Learn how you can help starting today: https://dsachieves.org/dsachieves-org-parents-become-a-research-participant

03/05/2026

One of the most common misconceptions about Down syndrome is that individuals are limited in what they can do.

That couldn’t be further from the truth.

Every day, we see how much individuals with Down syndrome achieve when they are given the right opportunities, whether it’s in education, sports, employment, or by being active, valued members of their communities.

The real limitations do not come from Down syndrome itself.

They stem from outdated perceptions and barriers that society imposes.

At DownSyndrome Achieves, our mission is to break those barriers through research, advocacy, and action that open doors for families and individuals everywhere.

This Down Syndrome Awareness Month, we invite you to reflect…

What assumptions might you be holding, even unintentionally?

How can you challenge those misconceptions in your own circle?

Change begins when we replace assumptions with truth and create a world that sees potential first.

02/26/2026

“Down syndrome research is one of the lowest funded types of research nationally and globally, which is why DSA is so important.”

This is a crucial fact to highlight with

Robyn DesJardins learned about DSA shortly after her first child, Maxwell, was born and became a fast advocate for her son after learning he had Down syndrome. Because of Maxwell, Robyn is part of DSA. She believes in our mission of advocating for Down syndrome research.

Like many others, Maxwell has experienced medical and health challenges associated with Down syndrome and may continue to do so in the future.

But DSA gives Robyn’s family and other families hope that one day their children will be able to experience new treatments to help improve DS health-related outcomes.

You can help sustain our mission.

Become a Pacesetter Monthly Giver by pledging $21/month ($21 for Chromosome 21 support!)

Learn how in the comments below.

02/19/2026

For three years, Dr. Karamichos searched everywhere. And found nothing. Not because he lacked the passion.

Not because the research wasn’t important.

But because he couldn’t access the one thing that makes Down syndrome research possible…

Families like yours.

He was on the brink of a breakthrough, studying eye disease that affects 1 in 3 people with Down syndrome, but the science couldn’t move forward without you.

Picture this…

Wall after wall.
Search after search.
With nothing to show for it.

Then he found DSA, and that changed everything.

Within months of working with DSA and connecting with families, Dr. Karamichos finally had what he needed. And today, that once-impossible study is being funded by a $275,000 NIH grant because parents like you said yes.

✔ Yes to contributing.
✔ Yes to being part of something bigger.
✔ Yes to making research happen that couldn’t exist otherwise.

This is how breakthroughs begin.

Not in labs alone.

But in living rooms, kitchen tables, and quiet conversations, where families say…

“Yes. We want to do something.”

If you’ve ever wished someone was doing more for your loved one with Down syndrome…

This is your chance to be a direct part of that more.

Email us today to learn how you can participate: [email protected]

02/05/2026

Did you know that nearly all adults with Down syndrome show signs of Alzheimer’s by age 40?

Yet, they’re often left out of clinical trials for treatments designed to help.

A new study brings hope and a reminder of the work ahead.

Researchers tested lecanemab, an FDA-approved drug that removes amyloid plaque from the brain, on brain samples from people with Down syndrome.

And the results were positive!

It successfully targeted the amyloid in all 15 samples!

But, it is worth noting that it is also attached to blood vessels, which could mean a higher risk for brain swelling and bleeding.

But, it is worth noting that it also attached to blood vessels, which could mean a higher risk for brain swelling and bleeding.

The takeaway?

These drugs might help, but we must test them in clinical trials with people who have Down syndrome to ensure they’re both safe and effective.

This research opens the door to early interventions that could improve lives, but only if the DS community is included from the beginning.

Interested in getting more research news like this?

Subscribe to our free newsletter and get on the list: https://dsachieves.org/keep-up-to-date/


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At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.