His motivation, His reasons
In 2014, Hampus Hillerstrom joined the board of directors of LuMind, and found a home among other like-mind supporters of research.After joining, his second son, Sebastian, was born in 2015, without Down syndrome.
During the next three years, while he was on the board, Hampus became keenly interested in several major research findings, which he believes are game changers with regard to Down syndrome.
In addition, in the spring of 2017, things changed at LuMind, and the foundation entered a period of transition. Dr. Michael Harpold, LuMind’s founding scientist and guiding force for the past decade passed away in March 2017. After more than four years leading the foundation, LuMind’s former CEO Carolyn Cronin left the foundation in May 2017 to pursue other opportunities.
The foundation was without a leader. Hillerstrom started thinking, “Maybe it could be me?” Gradually he shared his thoughts with other board members, and found a lot of support among them. He spoke to his wife and his colleagues at Proclara.
Hillerstrom became CEO and president of LuMind in September 2017. He said. “I see very interesting scientific avenues ready for translation but we will not see any progress with limited or no funding.” His plan is to increase the funding for this translational research and encourage the community to take action by sharing the impact it can have on those living and born with Down syndrome.
He’s working to make that happen as he did at Proclara where they raised $110M for promising Alzheimer’s drug candidates. And he believes that increased collaboration among all the Down syndrome foundations and with pharma industry players will be critical to be able to rapidly progress this promising research.
As for the game changing research, first, a study published by researchers at Johns Hopkins University in 2013 showed that a molecule in development given once to a mice model of trisomy 21 can result in a normal size cerebellum. This research could be helpful as the cerebellum is involved in motor control, some cognitive functions such as attention and language, as well as in regulating fear and pleasure responses.
Second, another study published by scientists at UMass Medical Center in 2013 showed that in cell culture, you can silence one copy of the extra chromosome 21. Silencing either genes of concern on the chromosome or the whole extra chromosome could have a meaningful positive benefit on independence for people with Down syndrome.
Third, a study published by geneticists at the University of Geneva, Switzerland in 2014 showed that genes on chromosome 21 are “up” regulated due to the extra copy of chromosome 21. However, they also unexpectedly showed that the trisomy 21 affects the regulation of genes on all the other chromosomes, both “up” and “down.”
“I believe that increased collaboration among the Down syndrome foundations, families, and pharma industry players will be critical to be able to rapidly progress this promising research,” said Hillerstrom
Multiple researchers, including two recently supported by LuMind, are exploring this phenomenon to understand which genes or regions on chromosome 21 are the most important with regard to the conditions observed in Down syndrome.
And, more recently in 2017, researchers from the University of Colorado Linda Crnic Institute for Down Syndrome presented convincing data showing that people with Down syndrome may be in a chronic state of inflammation due to the over-expression of interferon receptor genes found on chromosome 21. The chronic inflammation may explain certain conditions seen in people with Down syndrome, and can be explored clinically in the near term.
Hampus said, “I see a big discrepancy among what everybody thinks is possible and where the research already is today. While most families are focusing on early intervention and inclusion, which are our best options today, I believe that research can build on that and potentially allow our loved ones to reach even higher levels of functioning with better quality of life and improved independence.”
Read about his laser focus on research (Part III).