Maureen's Story

grandmother and child A CFC-funded organization is bringing light to the science of cognition research for people with Down syndrome – they have developed a public/private partnership for the world’s first clinical trial targeting Alzheimer’s disease-like characteristics in those with Down syndrome.

Maureen, a supporter of the organization and mother of a young boy with Down syndrome, watched her mother’s memory erode, and then faced Alzheimer’s disease for the second time in her family. 

“The first was the day I learned my son, Charlie, who is only four years old, is likely to develop Alzheimer’s disease at the same time I do because he already has Down syndrome,” related Maureen. “The link between Alzheimer’s disease and Down syndrome is unavoidable and unequivocal. Down syndrome is the existence of a partial or full copy of the 21st chromosome. Alzheimer’s occurs on the 21st chromosome. This is real. It’s already happening in my family. It can happen in yours.”

The organization awards grants to leading research institutions to ignite breakthroughs that will improve cognition and help prevent losses due to earlier-onset Alzheimer’s disease in people with Down syndrome. They communicate with biopharma firms like AC Immune, the company conducting the vaccine clinical trial, to help engage them as the research is ready to move from the lab bench to clinical trials.

The AC Immune study and the other lines of research that the organization is funding are providing hope not just for the parents of people with Down syndrome, but also for everyone who loves them.

“My mother lived with classic AD progressive deterioration for 20 years, ending in total incapacity,” writes Anna, PhD, RN. “Much later, my wonderful and beautiful granddaughter was born with Ds. Now 10 years old, she is very engaging, dearly loved, and quite high functioning, and new therapies to enhance her cognitive functioning (and maybe maintain mine!) may expand her potentials as she matures. Such possibilities on the horizon send expectant shivers of excitement through my entire being! She and I may come to have more in common than we thought!”

Since 2004, this CFC-funded organization has granted more than $13 million to ignite exciting research discoveries. 

More than the stimulating research breakthroughs that may extend beyond the Down syndrome community, the organization has ignited hope for people with Down syndrome and those who love them.