Seth Rogen made headlines when he testified before Congress and asked for increased federal funding for Alzheimer’s research. For the famous funnyman, the issue hits close to home: Rogen and his wife Lauren Miller have watched her mother deteriorate from early onset Alzheimer’s disease over the last eight years. Miller’s mother was diagnosed with the disease when she was just 55 years old.
The couple created Hilarity for Charity, which held its first event in 2012. The organization brings big name performers like Bruno Mars and Tenacious D onstage in order to raise awareness about Alzheimer’s. For the first time ever, Hilarity for Charity is coming to New York. The sold-out event will feature Demetri Martin, Aziz Ansari, Natasha Leggero and Hannibal Buress at the Jane Hotel on Tuesday night.
Miller spoke with Metro about her mother’s struggle with Alzheimer’s and what she and Rogen are trying to do to change the future of the disease.
What was it like watching your husband testify in front of Congress?
I had so many feelings. I was fighting back tears the entire time, and I felt pride and love and the thrill of being there. Seeing my husband speak so eloquently and passionately about something that has affected our lives was overwhelming in so many wonderful, powerful ways. It was one of the most special experiences of my entire life.
Do you feel he’s taken on your pain as well?
As much as he possibly can, yes. He’s been there since the very beginning. We were together for over two years before her diagnosis, and he’s really been there every step of the way. It has greatly affected him as well and really changed and shaped our lives in a lot of ways, both good and bad. And he’s such an incredible, caring, generous person that he’s absolutely taken it on as much as he can with her not being his own mother.
Were you surprised by the reaction he got after the testimony?
When we started Hilarity for Charity two-and-a-half years ago, we just thought, “We’ll do this event and make it really fun.” A lot of Alzheimer’s events are not fun because there’s nothing funny about the disease. It’s often really sad. But that’s the reality and truth of the disease. It’s been a slow progression with people reaching out to us – young people, especially – that are just sort of coming out and sharing their stories. It was an organic growth that happened naturally.
When [Rogen] spoke, I didn’t expect over six million people to watch the video, but we always talk about Alzheimer’s like it’s so rare and no one gets it, but that’s not true. It’s a huge disease and it affects entire families because of the amount of care you have to give the person who is sick. I knew those people were out there and I’m incredibly touched that it’s raised this level of noise in the Alzheimer’s community.
What do you want to accomplish through Hilarity for Charity?
If you compare Alzheimer’s to any other disease — cancer, heart disease, HIV, etc. — it’s extremely underfunded. The only reason why those have treatments and medications and research for a cure is because the amount of noise made by the people affected by these diseases. Alzheimer’s patients are pretty quiet about it; my own mother wouldn’t let us tell anyone about it even two or three years into her diagnosis.
I think that our goal with Hilarity for Charity is to get people to speak about it and make it known that this is something that needs a lot of attention. We’re not the kind of organization that’s going to raise the money to find a cure for Alzheimer’s; we need the government to do that. We need to rally people together and show the government that you need to not make this so underfunded compared to other diseases. We need just as much, if not more, than those other diseases, and at this point the only way to do that is to show the need for it.
Do you think there’s a stigma?
Absolutely. There’s a huge stigma around it, and Seth touched on a reason why in his speech. Part of the reason why people whisper the word “Alzheimer’s” is because the government whispers it.
There’s no survivor of Alzheimer’s who can give a great speech and say, “I was affected and here I am to tell my story.” We don’t have that. People are confused and scared. There’s no great voice saying, “This is something we need to get behind.” We want to make Alzheimer’s a household name, if you will, and push the government to find a cure. That stigma is going to remain until we can all get together and get over it.
How is your mother now?
She is very advanced now. She’s in full 24-7 care. She’s been incontinent for two, two-and-a-half years, and she struggles to walk.
What would she say about Hilarity for Charity?
She would just be filled with joy and pride. She was an elementary school teacher for 35 years and taught kids how to read. She was a mom involved in synagogue and school board, and she volunteered for Obama’s campaign even after her diagnosis. She made my dad go with her door-to-door because she couldn’t go by herself. She was very aggressive about the things she really cared about. I think if she could, she would be doing the same exact thing we’re doing. She’d be right there with us if she could be, and she’d be so proud and overwhelmed that we’re doing this — not just for her, but for the world.
Follow Andrea Park on Twitter: @andreapark