TODAY   |  September 03, 2013

Alzheimer’s activists seek to change face of disease

Some of those seeking a cure for Alzheimer’s disease say their cause has an image problem, lacking a major celebrity representative like basketball legend Magic Johnson, who advocates for HIV and AIDS awareness, or Michael J. Fox, who performs a similar role for Parkinson’s disease. NBC’s Maria Shriver reports.

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This content comes from Closed Captioning that was broadcast along with this program.

>> first, the age of alzheimer 's. september is alzheimer 's awareness month and we're kicking off a week long look at the disease . maria shriver is leading our coverage. good morning to you.

>> good morning, savannah. thank you so much. there is no cure for alzheimer's disease and there is no way to prevent it. meanwhile, more than 5.5 million americans are living with the illness and it's costing more than $200 billion a year to care for them. while almost everyone in the fight against alzheimer 's says to defeat this disease , somethi something's got to change.

>> reporter: take the people battling breast cancer , or aids activists, but what comes to mind when you think of alzheimer's disease ? activists believe alzheimer 's has an imagine problem.

>> it's a bummer of a disease you almost have to have the most fun charity event imaginable to counter act that weight in some way and make people excited about participating in it.

>> i'm happy that i've been the face of this disease .

>> reporter: as with magic johnson and hiv , michael j. fox and parkinsons, the hope is many more celebrities will lend their faces to the disease , like seth rogen and his wife, actress lauren miller whose mother was diagnosed at the age of 55.

>> it can be brutal. i'm at that point in my life where my girlfriends are becoming best friends with their mothers and, you know, on sunday i fed my mom dinner.

>> thank you for coming. it's not easy to get people to do this kind of thing.

>> reporter: rogen and miller are raising awareness and money with their fund-raising event called hilarity for charity.

>> how do you talk to young people ?

>> we're making it part of a conversation.

>> we raised over $400,000 here you guys.

>> reporter: but that's a drop in the bucket. experts say $2 billion a year is needed for alzheimer 's research alone.

>> alzheimer 's certainly needs a significant increase and it's a matter of getting the greater public to be engaged and to be outraged, frankly.

>> hiv aids activist whose grandmother had alzheimer 's said the alzheimer 's community needs to take a page from the hiv ,ed as -- and aids community and turn up the eat.

>> do you find in the alzheimer 's community more accept pr acceptance perhaps?

>> yes, but it will take a long time to do that.

>> alzheimer 's is a devastating disease .

>> like so many others in the battle for money, republican senator susan collins who lost her grandfather and other relatives to the disease says congress must match the funding of the other big diseases.

>> we spend less than $500 million on research to find a means of preventing or treating or curing alzheimer 's. that makes no sense at all.

>> cancer at $6 billion a year made enormous progress. hiv /aids is $3 billion a year. we made enormous progress. 500 million, we're not going to make it.

>> alzheimer 's activist.

>> how do you remarket the disease ?

>> brain health. living a healthy life. is having a check up from the neck up as common and unlettening as a check up from the neck down.

>> if i did a commercial tomorrow and showed 5 or 6 people in their 50s showing i have alzheimer 's, i am alzheimer 's would be one way to say it's effecting this bubble and not off if the future.

>> this is the most feared disease . we need to take that fear and turn it into engagement and action.

>> it may come as a surprise but there's a national alzheimer 's act signed in 2011 and it comes for discovering ways to prevent and treat alzheimer 's by the year 2025 but that seems like a far way off.