Hollywood and Patient Advocacy – two people who are on our Board but never boring

At first glance Lauren Miller Rogen and Dr. David Higgins seem an unlikely pair. She’s an actor, writer, director and has worked with some of the biggest names in Hollywood. He has a doctorate in molecular biology and genetics and has worked at some of the most well-known companies in biotech. But together they make a great team.

Lauren and David are both on the CIRM Board. She’s a patient advocate for Alzheimer’s and the driving force (with her husband Seth) of HFC (Hilarity for Charity), which has raised millions of dollars to help families battling the disease and to educate young people about the condition. It’s also made a lot of people laugh along the way. David is a patient advocate for Parkinson’s and has been instrumental is creating support groups that help patients and families cope with the disease.

Together they are a force for good. And they’re also really funny. And that’s why we invited them to be guests on the CIRM Podcast, Talking ‘Bout (re)Generation. They are smart, engaging, witty, and they don’t pull punches.

I know you are going to enjoy the show.

CIRM board member Lauren Miller Rogen appointed to California Alzheimer’s Task Force

Lauren Miller Rogen, Hilarity for Charity co-founder and CIRM Board Member

California has the largest aging population in the United States. The U.S. Census Bureau has estimated that one in five Californians will be 65 or older by the year 2030. Unfortunately with age comes a wide of health related issues that can arise such as Alzheimer’s.

Alzheimer’s is caused by changes in the brain that affect memory and thinking skills. The disease can progress to the point where carrying out the simplest tasks become quite a challenge. In the United States alone, 5.8 million people are living with Alzheimer’s, 630,000 of whom live in California. By 2050, the number of people with Alzheimer’s in the United States is expected to increase to almost 14 million.

To address this growing problem, California Governor Gavin Newsom announced the creation of a California Alzheimer’s Task Force comprised of scientists, politicians, and other individuals dedicated to addressing the needs of the Alzheimer’s community and the impact the disease has on California. The new task force has been tasked with releasing a report on the disease and ways to address the challenges it poses by 2020.

One of these task force members is our very own Lauren Miller Rogen, who is a dedicated member of our governing Board and the co-founder of Hilarity for Charity, a charity organization that raises awareness about and funds for research into Alzheimer’s. In addition to her advocacy work, Lauren is also a screenwriter and actress, staring alongside her husband Seth Rogen in movies such as 50/50 and Superbad.

“I’m so honored to join the Task Force to fight for the 670,000 Californians currently living with Alzheimer’s and for those who care for them,” Miller Rogen said. “This is a tremendous and diverse group who intend to create and propose real ideas to change the course of this disease.”

For Lauren, her journey towards becoming an advocate for Alzheimer’s is a very personal one. Her grandfather died of Alzheimer’s when she was just 12 years old and her grandmother died of the disease six years after that. Now, her mother is struggling with Alzheimer’s, having been diagnosed at the age of 55.

You can read more about Lauren’s story on a previous blog post.

CIRM have given awards totaling over $56 million throughout the years dedicated towards Alzheimer’s related research.

The Sad Lane: How I navigated one of the happiest times of my life while my mom was losing hers to Alzheimer’s

In 1983 President Ronald Reagan named November as Alzheimer’s Awareness month, to raise awareness about the growing impact the disease was having on Americans. At the time there were less than two million people with the disease. Today that number has grown to more than five million and is expected to reach 16 million by the year 2050. There is no cure and no effective treatments.

To mark Alzheimer’s Awareness month we are reprinting an article that CIRM Board member and Patient Advocate for Alzheimer’s, Lauren Miller, wrote for Lenny magazine, charting her own personal journey with the disease.

The Sad Lane

Stories of Hope: Alzheimer’s Disease

This week on The Stem Cellar we feature some of our most inspiring patients and patient advocates as they share, in their own words, their Stories of Hope.

Adele Miller knew what came next. She had lived it twice already: her father’s unraveling, due to Alzheimer’s disease, and, a few years later, her mother’s journey through the same erasure of mind and memory. So when doctors told her, at age 55, that she, too, had the disease, she remembered her parents’ difficult last years.

Lauren Miller has seen first hand how Alzheimer's can erase a lifetime's worth of memories.

Lauren Miller has seen first hand how Alzheimer’s can erase a lifetime’s worth of memories.

‘Tell no one,’ she told her family. Keep it secret.

“She was ashamed,” her daughter, actress and writer Lauren Miller, recalls. “She was so embarrassed because there’s such a stigma.” And she worried about her family. How would they handle all this? “I asked her once if she was scared,” Lauren says. “She said she wasn’t afraid for herself. But she was afraid for me, and my dad, and my brother. She knew what she’d gone through with her parents.”

Alzheimer’s disease has been a constant in the actress’s family. Perhaps that made her more attuned to the subtle changes that can herald the onset of the disease. At Lauren’s college graduation, she saw the first clues that something was amiss with her mother. She was repeating herself. Not just, “Oh, have I told you this before?” This was different. A few years later, as she and her mother prepared for a party, Lauren was stunned by the changes in her mother’s behavior. Her mother’s memory no longer seemed to function. She kept forgetting that the taco salad was vegetarian. She kept asking over and over where to throw the garbage. Lauren knew that’s not like her mother, a teacher for 35 years. So she sat down with her brother Dan and their dad. It was time to do something for Mom.

“It’s not that my dad wasn’t noticing things. But I don’t think he wanted to admit there was a problem. And he was simply too close to it,” Lauren says.

It took less than five years for Alzheimer’s disease to rob Adele Miller of nearly everything. Before she turned 60, she couldn’t write. She couldn’t speak. She didn’t even recognize her family.

The loss, the sadness, and the anger that Alzheimer’s families feel is compounded by a sense of utter helplessness against a disease that yields to no drug. But Lauren decided she would not be helpless, and in 2011, she and her husband, actor Seth Rogen, launched Hilarity for Charity, which aims to raise Alzheimer’s awareness in young people while also raising funds for the Alzheimer’s Association. This year Hilarity for Charity sponsored its first college fundraisers. It also hosts support groups for under-40 caregivers.

“Seth has the ability to reach an audience that may not know much about Alzheimer’s. His fans are 16 year old boys who aren’t generally the target for Alzheimer’s awareness,” Lauren said. “But he was able to strike a cord with a lot of these young people. We get emails from people who are 16. ‘Thank you for doing this. I felt alone. Now there’s a voice.’ This is considered an old person’s disease, but it’s really not. It affects everyone.”

In December 2013, Lauren, co-writer, producer and star of For a Good Time, Call, joined the CIRM governing Board, the Independent Citizens Oversight Committee, as a patient advocate for Alzheimer’s disease.

“Alzheimer’s research is woefully underfunded by the government, so it’s important to have bold, innovative approaches like CIRM’s to take research to the next level,” Lauren said. “Stem cell research is at the cusp of something life changing. To me, it’s one of the things closest to making a step toward treatment. I jumped at the opportunity to be part of it.”

For information about CIRM-funded Alzheimer’s disease research, visit our Alzheimer’s Fact Sheet. You can read more about Lauren’s Story of Hope on our website.