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 LBD in the news (former rep Evans with LBD meets Obama) 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post LBD in the news (former rep Evans with LBD meets Obama)
This newspaper article is from last Thursday's Quad-City Times (of Davenport, IA). It's about former US representative Lane Evans, who lives in assisted living in IL and has LBD. Evans met with Obama on election day. (I read this article today on the LBDcaregivers Yahoo!Group.) ... 461927.txt

Evans recalls election night moment with Obama
November 13, 2008
Quad-City Times
By Ed Tibbits

On a night when the world watched Barack Obama make history by becoming the first African-American to be elected president, former U.S. Rep. Lane Evans had a rare opportunity to meet with him personally.

Evans, who represented Illinois' 17th Congressional District from 1983 to 2007, met with Obama just hours before the president-elect would mount a stage in Chicago's Grant Park and give a historic victory speech.

The meeting, at a Chicago hotel in the late afternoon, was a poignant encounter, according to a person who was there. And it was a nod from the man who is about to become the most powerful person in the world to someone who endorsed him early on but is fighting two debilitating diseases.

"It was very quiet, very personal," said Cher Erickson, the guardian for the former congressman who is battling Parkinson's and Lewy body disease, a leading cause of degenerative dementia.

Evans, who is 57, lives at an assisted living center in Silvis, Ill.

He has difficulty finishing his thoughts, and his sentences meander. But in an interview Thursday, he said the meeting between him and the incoming president was a memorable moment.

"It was everything you'd imagine," he said.

It isn't unusual that Obama and Evans meet personally. The president-elect has repeatedly praised the Rock Island Democrat, and when Obama was in Davenport in August, the two met.

But this meeting, on a historic night, was particularly meaningful for Evans, Erickson said. The two talked about the campaign and Evans' early support for Obama.

In June 2003, Evans endorsed Obama from a pack of better-known suitors for the Democratic nomination to run for an open U.S. Senate seat. At the time, Obama called Evans a hero and said his endorsement was an "enormous boost."

Now, it's Evans who is effusive in his praise of the president-elect.

"I think he'll be a great president," he said.

Obama and Evans spent 20 to 25 minutes together.

Evans, Erickson and another friend later went to Grant Park to watch the president-elect give his acceptance speech in a VIP area.

They were among political friends of Obama's, as well as celebrities, such as Oprah Winfrey, Brad Pitt and Angelina Jolie.

Pitt came over to shake Evans' hand, Erickson said, and even gave her a kiss on the cheek. "It was a pretty cool time," she said.

Evans is planning to go to the inauguration in January in Washington, D.C.

It is the beginning of a new era, Evans said, and he made clear he's eager to see a change in administrations.

While a congressman, Evans was harshly critical of the Bush administration. He thinks with Democrats now controlling the White House and Congress, there will be substantial change.

"I think it's a pretty large mandate," he said.

Ed Tibbetts can be contacted at (563) 383-2327 or

Mon Nov 17, 2008 1:40 pm

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: LBD in the news (former rep Evans with LBD meets Obama)
I read this yesterday, too. It was a good piece.

Is there any other celebrity, one with national or international appeal, that speaks for LBD? Not as a secondary issue tacked on to Nancy Reagan's Alzheimer's campaign or Michael J Fox's Parkinson's campaign, but someone who speaks directly for Lewy Bodies?

Yesterday, I heard Barbra Streisand, in just a little over one minute on Oprah, raise awareness of heart disease in women by telling a worldwide audience that heart disease kills more women each year than all forms of cancer combined. She also announced that she would match donations that reached (I believe together) 5 million dollars. As this is another cause that is near and dear to my heart (actually my aorta), I was thrilled for this support.

All due respect to Rep. Evans, whom I do admire. But we need someone with a bit of glamor to raise awareness of LBD, as a distinct concern in its own right. I have no idea how to do this, nor the contacts or access for it. But is this something that LBDA would like to pursue? Or do we already have such representation? If not, do we have someone with this kind of exposure among us who would be comfortable looking into this?

(Anyone know if Bette has a cause?)

Just a thought.


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Wed Nov 17, 2010 4:01 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: LBD in the news (former rep Evans with LBD meets Obama)
Hi Kate,

The "yesterday" when I read the piece was November 16th of 2008!

I don't know of any living celebrity who has LBD and speaks to it. Perhaps the most well-known person with LBD was the actress from Golden Girls who died over two years ago -- Estelle Getty. It was also said that she had PSP. I don't think a brain autopsy was done (at least the results weren't announced) so no community can be confident in "claiming" her.

There were some LBDA efforts during LBD Awareness week recently. (Not sure if it was LBD Awareness week or LBDA Awareness week.) Probably the biggest celebrity who mentioned LBD that week was the woman on The View -- Sherri Shepherd. (There are posts about Awareness week activities elsewhere on the Forum.)


Wed Nov 17, 2010 5:09 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Re: LBD in the news (former rep Evans with LBD meets Obama)
Yes, what is needed is a celebrity who has gone the same route as Joy and Charlie. He was given hands on studies at a research Clinic as well as the records sent in by his "at home" medical team, all followed with Post Mortem brain donation. Joy and Charlie are celebrities in my book but not that well known in the same circles as the better known celebrities in political and entertainment world. Not wishing this on any of them.


"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Wed Nov 17, 2010 5:59 pm
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