Marilyn is at the podium talking about the agenda for today; unfortunate news is that Phil Horner will not be giving his presentation here today because of a family emergency.
The good news about that is that we get a little more time for lunch, a little more time for the presentations we do have.
Now . . what's u2fp anyway? Not a fundraising organization, just a group of people connected to sci in some way who wanted to step up and become the voice of the community. We see our job as
She introduces our public policy liaison, Rachel Hammerman, who helped us get the CDRPA passed.
Rachel is young and beautiful, standing at the microphone explaining that she's going to talk about speaking up and being visible. "Raise your hand of if you can't raise your hand have your neighbor raise two hands . . . " Almost everyone does.
So what does it mean to be an advocate? Woman says that for her it was speaking up and asking that her son get what he needs. Todd says that the most powerful thing is how you appeal to someone's emotions. Stephen Davies says that he tries to come up with effective therapies, and speaks with politicians and with the media about the fact that the research is getting somewhere. Sue Maus says that last year on Capitol hill Stephen had a 102 fever and went to the congressional briefing anyway, then agreed to go to Norm Coleman's office . . . Coleman wanted to hear from him: "Where is the science? How close are we?" She says that Stephen's presence was key to getting that vote.
Rachel: that bill was on the floor for 7 years. We were up there for 4 of those years, and if you were on our mailing list, you got those emails, you made those calls.
Advocacy means speaking out on our own behalf or on behalf of others -- what we're doing is helping people become passionate about research and cures.
If someone asks you what you did this week, you can tell them: I was learning about research for sci. That's advocacy.
What forms can advocacy take? Just about anything . . . for some people it's clicking that button when you get an email, for some it's public speaking, for some it's just talking with your neighbors. It's NOT keeping your mouth shut.
The key is persistence, and obviously every person in this room knows what that word means . . .
So, she's going to go through a list w/ more detail. Suggests that people use the blog link to show others what this conference was about. The big goal is to show others what this is. Use all the social networks you have, like facebook -- put it on your status. "I was at w2w in chicago."
Then there's the media advocate . .. before you get to that, you need a 15 second elevator pitch -- a sentence that can be said in the time it takes to ride in an elevator.
Media includes everything from old-fashioned newspapers to twitter. Yesterday Naomi Kleitman said yesterday that she was quoted in the media as saying "I don't think there's going to be a cure" when what she said was "I don't think there's going to be one single cure, it's going to be more of a combination." So, be careful.
Sean Tipton, who led the fight on Capitol Hill to pass funding for ESCR, says that you must have 4 talking points, and use the image of a prism to help you stay on them. The question comes through the tip of the prism . . . your job is to direct that question to one of the 4 faces of the prism-- your talking points. Never, ever leave them.
All of us, she says, are BOSSES in the sense that each of us has 4 employees: our representatives in congress (2 senators and 1 representative, plus the president). You're free to call them up, write to them, get their attention. The person you'll usually work with is the Health Legislative Assistant. You'll probably get their voicemail. You almost NEVER get to speak with them right away. This is where you must be persistent . .. eventually will get to speak with them.
This is why it matters so much to have some talking points -- faces of the prism -- all ready. Go ahead and use what's on the u2fp website; that's what it's there for.
Talks about the wonderful Donna Sullivan, who put the phone numbers of her own representatives in Ohio into her speed dial and called them every day until she got their attention. They all signed on to CDRPA.
No matter what your own strengths and weaknesses are, you can make a difference. Talk about why this matters so much, wherever you are.
The whole reason u2fp exists is to give each of you a LOT of ways to advocate. Call us, email us, read your handouts.
Joe White is talking about being in the Mall of America, and how he always carries cards with him . . . if someone asks a question ("How do you like your chair?") I give them a card and explain what it means.
Todd says that people should remember that the legislative office people you usually talk with are very young, and they'll be moving up the ranks; now's an easy to time educate them and motivate them to help when they have more authority. Make relationships now.
Joe says that people should call the newspapers when we get home to describe this event. You might get a little blurb, but every bit of exposure helps.
RAchel signs off, and Marilyn is back to say that although u2fp is not a fundraising organization, we do recognize that sci research is deeply underfunded, and that many people here are interested in how to do this.
The website and the materials we handed out at registration have a fundraising kit that has some guidelines about how to do this. Joe White has staged a Walk and Roll fundraiser in his home town . . . he explains:
We got together a couple of years ago . . . I left working2walk a few years ago and decided that I needed to do something. We rented a pavilion and got some local businesses to donate the cost of that, plus t shirts and food and flyers. I thought we might get 20 people who donated 100 dollars. We got 120 people and raised 16 Thousand dollars. Gave some to u2fp and some to Dr. Davies and kept some seed money for the next one. Our 3rd annual event is this October.
Marilyn: anybody who's ever done anything like this will tell you that it's a lot of fun. Image is up of Karen Miner's group, Research for Cure, which has raised $340,000 for Hans Keirstead's lab in Irvine over the last decade or so.
Okay, so what if you don't have the time or interest to organize a fundraiser? There are ways to participate . . . we know of a few people who did the Rock and Roll marathon, or the Team Reeve marathon and raised money through them.
There are also matching gift programs that many employers use. And, think about micro-funding. You don't need to go raise $500,000 . . . you can raise $5 from 100,000 people, or from 50 people. Whatever. It all helps, and whatever you do, even the old tried and true things like car washes and bake sales, is using what you have to make a difference.
Woman is describing how after her son's best friend was injured in a crash 16 years, her daughter had the idea of raising money through a car wash and bake sale -- that was a success and it grew into a statewide organization.
Image of Jennifer Longdon, who did the Rock and Roll marathon in Phoenix and raised a pile of money for the Keirstead lab.
Marilyn describes a Chicago guy who was here earlier but had to work -- 2 year old injury and dove right into fundraising. Has so far raised $100,000.
Turns it over to Donna, who will introduce Wise.
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