Saturday, September 29, 2007

for those in Florida, part 2

Someone anonymous took exception to Patty's earlier post. I am allowing her the chance to rebutt the anonymous comments.
I understand that she lives in Florida and therefore this might not seem to impact us in New England or elsewhere. But if someone in Florida comes up with a vaccine, a cure, a real treatment that stops this disease in its tracks, it benefits all of us who are living with loved ones in the hell-halls of Alzheimer's and it will prevent others from having to follow us down this road. (Sorry about the mixed metaphor.)
So here is Patty's response to Anonymous' response:


Thanks for giving me the opportunity to respond to this post on your blog. Sorry to bring the discussion here, and if you want to end it after my post, I understand completely.

There are two issues I’d like to discuss.

I, more than most, take issue with the notion of “blind funding”. Pouring our tax dollars into useless pork is indeed something that should be forbidden. When your father is peeing in the planters at the mall because he has no sense of who or where he is, some of us might consider places like the Byrd a necessity, not something that should be dismantled or threatened every year by the legislature. There are NO perfect institutes and we can rant and rave about how bad things are and how we’re all getting ripped off, but when the rubber hits the road, you’re going to pray someone is in a lab somewhere working towards curing Alzheimer’s disease. There is no issue with the science coming out of the Byrd. There is no question as to their ability to generate grant money - they are the only federally designated Alzheimer’s Disease Research Center in the state.

But perhaps “Anonymous” takes issue with the behind-the-scenes politics that built the Byrd in the first place.

I've heard that Johnnie Byrd was a contentious, tyrannical politician. I don’t think there is any argument about that, is there? Many have said it’s the name that causes the inflammation of discussion about the Byrd. My solution to that is auction off the name - one letter at a time - and let the people angered over the way the Byrd was railroaded through the legislature purchase the removal of each letter. If hatred could have a price, each letter of Johnnie Byrd’s name could generate a whopping amount of money to support Alzheimer’s research. By the time it’s finished, there would be enough money collected to fund the Byrd for years.

• The anonymous comments left by people on the mentioned articles are very interesting. Thank you for providing the links. I agree that money spent on lobbyists seems a waste, and PR firms have always made me scratch my head - why do we pay companies to do what advocates are supposed to do? Perhaps the answer can be found by asking the millions of people who sit on their couches, quarterbacking the right and wrong way of doing things without ever getting off their butts to be heard. And while I understand the fear an employee might have by speaking out against their boss, hiding behind anonymous posts seems even worse.

Complaining anonymously is a start, I guess. It offers the cloak of anonymity to be used as protection. But if real change is ever to occur, and if real problems are ever going to be solved, it will take real human beings, stepping forward out of anonymity, to address them.

We are all afraid of losing the roof over our heads, keeping our careers on track, and keeping our kids fed. None of us want to risk losing what we’ve got. But that doesn’t release us from our duty to speak the truth and change things that need changing, especially in the publicly-funded institutions in which our best and brightest scientists work.

Til that happens, I support this institute, its research and its responsibility to push Alzheimer's research forward in the state of Florida.

Meanwhile, anybody want to start the bidding on the letter “J”?


e said...

I read those articles and did not take it as a negative to patty's post... Just more information and background on what has happened so far with the project.

Incidentally, as much as AD is affecting my mother, husband and I, when I followed the link to donate and saw that they endorsed animal research, I just could not give money to this organization. If there is any research that does not torture animals while searching for a cure, I would be very interested in supporting that.

(This is not intended as a negative comment, so I hope it does not come across that way).

Anonymous said...

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