DownSyndrome Achieves

07/21/2026

When people hear that our biobank contains hundreds of blood samples, it's easy to think of them as numbers in a database.

We never do.

Behind every single sample is a family.

A family that rearranged their schedule.

A parent who chose to participate because they hoped it might help another family someday.

A young adult who rolled up their sleeve.

A child whose parents believed that even one blood sample could make a difference for future research.

Every sample represents trust.

That's why we're so intentional about how we use those samples.

Researchers don't simply receive access because they ask.

Each project is carefully reviewed to ensure that those precious donations are being used to answer meaningful scientific questions.

Our responsibility is bigger than maintaining a biobank.

It's honoring every family's decision to say, "We want to help."

To every family who has donated...

Thank you.

You may never meet the researchers your contribution supports.

You may never know every discovery your donation makes possible.

But please know this...

Your decision matters.

Every advancement in research begins somewhere.

Sometimes, it begins with one family saying yes.

P.S. If you want to learn more about how to become a research participant, email us at [email protected]

07/14/2026

People often ask us what happens after a researcher reaches out to DownSyndrome Achieves.

The answer might surprise you.

Not every conversation becomes a partnership.

And that's intentional.

Our goal has never been to work with the greatest number of researchers. It's to work with researchers whose projects have the greatest potential to advance Down syndrome research and make responsible use of the precious samples families have entrusted to us.

Every blood sample in our biobank represents a family who said "yes” to donate…

A family who took time out of their day.

A family who believed their contribution could help future generations.

A family who placed their trust in our mission.

We don't take that responsibility lightly.

That's why every research opportunity is carefully evaluated. We consider factors such as scientific merit, study readiness, ethics approvals, and whether our biobank is truly the right fit for the project.

Sometimes that means saying yes, and sometimes it means recognizing that another opportunity may have a greater impact.

Being thoughtful about these decisions helps ensure that every sample contributes to meaningful scientific discovery.

To every family who has contributed samples and participated in our biobank...

Thank you.

Your generosity is helping accelerate research today while creating opportunities for discoveries we can't yet imagine tomorrow.

P.S. If you want to learn more about how to become a research participant, email us at [email protected]

06/25/2026

We’re looking for a development professional who can see a great story and knows how to tell it to funders.

DownSyndrome Achieves is hiring a Fundraising & Development Consultant (contract, fully remote).

A LITTLE ABOUT WHERE WE ARE:
We’ve built the DSA Biobank in partnership with Cincinnati Children’s Hospital Medical Center. More than 200 individuals and families are enrolled. Our biospecimens have already helped unlock a $275,000 NIH research award. Research interest in Down syndrome is expanding nationally — and we’re one of the few organizations with the infrastructure to support it.
This role exists because we’re ready to grow, and we need the right person to help us get there.

HERE'S WHAT THE WORK LOOKS LIKE:
• Leading our Annual Campaign toward a $204,500 contributed income goal — and being accountable for hitting it
• Researching, writing, and winning private and research-focused foundation grants (target: 4+ private, 2+ research-focused annually)
• Building and managing an individual major gift portfolio — from prospect identification through solicitation and close
• Developing planned giving relationships and moving donors through a legacy giving pipeline
• Securing 3+ new corporate sponsors and growing revenue from existing partnerships
• Working directly with our CEO and board to set fundraising strategy, not just execute tasks

This is a high-autonomy contract role. You’ll set direction, manage your own pipeline, and be accountable for real outcomes.

THE PROFILE WE're LOOKING FOR:
You have 5–8+ years of nonprofit development experience — and you can point to dollars raised as a direct result of your work.
You've written grants and won them. You've cultivated donors and closed gifts — not just supported the process. You know the difference between being in the room and owning the outcome, and your track record reflects the latter.

You can work independently in a lean environment, set your own priorities, and be accountable to real revenue goals without layers of oversight. You're comfortable working directly with a CEO and board, and you bring the discipline to manage a pipeline without someone managing you.

And ideally — you connect with this mission.

We are not looking for a grant writer alone, a donor relations coordinator, or someone transitioning into a fundraising leadership role for the first time. We need a well-rounded development professional who has personally generated contributed revenue through both grants and individual giving, and who is ready to do it again — independently, on contract, for an organization doing work that matters.

Contract | Remote | Hourly, negotiable

To apply: send your resume and a brief note about why this role makes sense for you right now to [email protected]

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.