Our Story at DownSyndrome Achieves

Lito Ramirez has held many titles, including Press Secretary, Account Director, and Sr. Product Marketing Manager (just to name a few). And today, he is proudly serving as CEO of DownSyndrome Achieves. But perhaps the biggest role of his life is being a father to three kids. His son, Cal, in essence, also gave birth to DownSyndrome Achieves the day he was born. And it’s through this organization today, that will change the path forward concerning basic science research related to Down syndrome.

A Father’s Child Diagnosed With Down Syndrome

Lito’s story starts when he was a kid. He was expected to grow up and become a surgeon like his father. But Lito made other plans at the end of his sophomore year of college. You see, politics would become his passion and professional path forward. Not medicine. The medical world could be something for others in his family to pursue, but not him. His pre-med journey would come to a close, and medicine would be something he would leave behind for good. Or so he thought. But as many of us know, life is unexpected.

Fast forward to several years after college. Lito married his wife, Kat. They had a beautiful family with two children, but on one calmer afternoon in 2005, Kat revealed her desire to grow their family even more. And so they decided to try for a third child. At age 35, Kat became pregnant. Because of her advanced maternal age, the doctor encouraged them to have additional testing for any genetic anomalies to give what he called “peace of mind.”

Then at that 11-week ultrasound, their world changed forever. On the morning of their ultrasound, the technician grew quiet in the room. Scans showed markers for Trisomy 21 or what many know as Down syndrome. Months later, on the day of Cal’s birth, it was confirmed he had Down syndrome. In Lito’s own words, the news felt like a “sucker punch” despite the early indicators from their ultrasound. But he knew, looking at Cal, there was so much love he saw in his eyes. And he had to do more to create a healthier future for him.

Making Down Syndrome Research the Focus

For the first nine years of Cal’s life, he experienced nine significant surgeries. At three months old, he was diagnosed with a congenital heart defect. At four months old, he underwent an open heart and lung-bypass surgery, requiring an 11-hour procedure. In later years, Cal also required spinal cord surgery and gastrointestinal surgery. It was a lot. Countless days were spent in the hospital. As Lito spent time in waiting rooms, he started to ask himself an important question. “What was being done for Down syndrome research today?” And with his experience in the political arena and pharmaceutical industry, he started to approach his question as a business problem.

His research began. He found that not much was being dedicated to draw attention to Down syndrome. In fact, support for Down syndrome research was disproportionately underfunded, according to a report on nih.gov. In 2014, for example, Multiple Sclerosis having closer to the same number of patients as Down syndrome in the U.S. was being funded by 4x the amount. This felt unacceptable. So Lito started reaching out to the research community. He knew he had to raise awareness about Down syndrome funding and research. After talking with researchers, their need to initiate studies became clear – increased access to biospecimens. A national biobank for Down syndrome was required, but no one was taking it on. So the answer was simple. DownSyndrome Achieves needed to create a biobank. And they did.

More about Lito

Lito’s 20+ years of senior-level experience in B2B healthcare helps fuel the growth of DownSyndrome Achieves today. When he’s not devoting time to DownSyndrome Achieves, Lito is an instrument-related private pilot who enjoys flying anywhere with his family for lunch or long weekend trips.

Booklet Cover

Download our free “Banking on Breakthroughs” booklet to learn how you can drive innovations in Down syndrome research today.