You could have heard a pin drop in the auditorium. The audience of young stem cell researchers was gripped by every word of Lauren Miller’s heartbreaking story about the impact that Alzheimer’s disease has had on her family. Only a child when her grandfather was diagnosed with and later died of Alzheimer’s, she mistook his symptoms, like repeating stories over and over, as his way of making her laugh.
Lauren was fifteen and much more aware of the brutality of the disease when her grandmother, the vibrant family matriarch, was diagnosed with Alzheimer’s and soon, ”stopped talking, stopped walking and eventually curled up in a ball and stayed that way for the last, many months of her life.”
Miller, a screenwriter and film actress, is the Alzheimer’s patient advocate member of CIRM’s Board. Last month, she was the opening speaker at the 2015 CIRM Bridges Trainee Meeting, a two-day event which showcases the work of undergraduate and Master’s level students who, through the support of the Bridges program, conducted stem cell research at world class research institutes in California. This video recording of Lauren’s talk is a great watch but keep a hanky near by:
Her presentation clearly resonated with the students, likely because their internships were mostly centered around the laboratory bench, and Lauren’s story provided a personal, first-hand account of a disease that could one day be treated by stem cell-based therapies. Also, Lauren was just about their age when, sadly, she first realized that her mom was showing the signs of early onset Alzheimer’s. Her memory of this moment is crushing:
“I first noticed it the weekend of my college graduation. She told me the same stories a few times and deep down inside I was devastated. I said nothing to anyone. Maybe if I pretended it didn’t happen, it wouldn’t be real. Maybe it was a one-time thing and it would just go away. Of course, it didn’t go away.”
Out of this darkness, Lauren has become a source of unwavering support for other families and caregivers who are beaten down by this disease on a daily basis. She and her husband Seth Rogen founded Hilarity for Charity which she says aims, “to raise awareness about Alzheimer’s among young adults and to support those who are going through it.” In only three and a half years, Hilarity for Charity has raised almost $3 million. Recently they launched a partnership with Home Instead Senior Care and in the past six months have funded 8000 hours of free at home care to give Alzheimer’s caregivers a much needed break. For me, one of the most poignant sections of Lauren’s talk is when she read a note from one of the recipients of these grants:
“The words, ‘thank you’, just don’t seem to be enough to express my heartfelt appreciation. I’ve barely been out of Sue’s sight since 2006 and our world has shrunk to the size of her bedroom and bath with conversations from babbling to hysteria. Please accept my total gratitude for this chance to join humanity again.”
At CIRM, our Board has awarded close to $55 million to stem cell related Alzheimer’s research. These cutting edge research projects aim to gain a better understanding of the disease and to progress stem cell-based treatments into clinical trials. Here’s hoping for an accelerated cure for Alzheimer’s to end the suffering of both patients and caregivers.
Stories of Hope: Lauren Miller
Stories of Hope: Dick Mora
CIRM Alzheimer’s Disease Program Fact Sheet
Video: Alzheimer’s Stem Cell Research: Ask the Expert – Larry Goldstein, UCSD
Video: Neural Stem Cells Reverse Alzheimer’s-Like Symptoms