His Fate, His Mission:
Hampus Hillerstrom never thought that his strong connection to Alzheimer’s research would lead him to his new position as LuMind Research Down Syndrome Foundation (LuMind RDS) CEO and President. He is a co-founder of Proclara Bioscience, a biotechnology company focused on finding treatments for Alzheimer’s and other neurodegenerative diseases.
A few years after launching Proclara, Hampus and his wife Lianor Da Cunha Hillerstrom faced a decision that they never anticipated. Pregnant with their first child at the age of 37, Lianor underwent now routine pre-natal testing.
The results took them by surprise and were overwhelming: Trisomy 21, Ds.
Lianor already knew what the results would mean to their lives. She comes from a huge family: one side from Portugal and the other from the U.S. Both her parents were one of ten siblings. Within her big family, she had an aunt and two cousins with Ds.
Hampus knew nothing about Down syndrome, and had not previously met a person with Ds.
For the first time, he learned that those living with Ds have intellectual disability, and are prone to early onset of Alzheimer’s.
“My first reaction was to read as much research as I could. I looked up clinical trials and could count them on one hand,” he said.
After careful thought, Hampus and his wife agreed to go through with the pregnancy, and he said, “We never looked back.”
Fortunately, their son Oskar, now 4, did not require heart surgery after birth. He is receiving early intervention therapies, aimed at the skills that he will needs to be meaningfully included in school, and at building the groundwork for his future.
Hampus commented, “We love Oskar in so many ways and are always impressed by each new milestone he achieves. To me, independence for Oskar when he grows up is about self-agency, being able to manage a home budget, performing critical thinking, drive, live on his own, and have broader career options. I believe that medical research is critical to meaningfully allow that.”
“To me, independence for Oskar when he grows up is about self-agency, being able to manage a home budget, performing critical thinking, drive, live on his own, and have broader career options. I believe that medical research is critical to meaningfully allow that,” said Hampus Hillerstrom.
He continued, “I was born without my left forearm, and have used a prosthesis since the age of two. I know what it’s like to be different. While my physical disability is very different from an intellectual disability, I know that I need to be more organized and more resilient. I need to apply the best technology to achieve my independent goals. I hope to apply these ideals to helping Oskar.”
Lianor and Hampus are taking a team approach to helping Oskar gain independence in his lifetime. Lianor is focused on early intervention and inclusion for Oskar and has volunteered at their local affiliate Massachusetts Down Syndrome Congress.
Given his background in drug development and as an entrepreneur, Hampus is devoting his efforts to supporting Ds research.
That has led him to LuMind RDS.