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Kennedy's Disease Chat Transcript 10-03-2009
Topic: Fundraising Ideas
Host: Lou Tudor
UTE: Good Morning Lou
loutudor: Good morning UTE!
loutudor: Might be light attendance today...
loutudor: Hey Gary!
UTE: How's the weather in your part of the world...Good Morning Gary
gary_kc: Good morning. This is Gary joining from Kansas City. It is overcast this morning.
loutudor: The humidity is finally coming down in FL
gary_kc: Hi loutudor!
loutudor: Morning Mike!
MikeG: morning Loy
Bruce: Good Morning
loutudor: Morning Bruce!
MikeG: it's going to be one of those mornings...
loutudor: Good morning losh and Paula!
Bruce: Morning Paula
MikeG: I like the new chat announcment Bruce!
loshimo11: Good morning everyone. This is Luis Shimomura joining in from San Francisco.
loutudor: Hi Luis!
Paula: Good morning, everyone
Bruce: Good! I have some interesting results from the first distribution that I am digesting
loutudor: Heu Murf!
loshimo11: Hey Bruce... Just want to tell you how much I'm enjoying your daily blog.
Bruce: Thank you
loutudor: Bruce's blog is well worth the read!
Bruce: Morning Murray
MikeG: really - he should be an author Luis
loshimo11: I really wish I could write as well you Bruce.
loutudor: Morning Pooh!
gary_kc: Bruce, I am larning lots from your blog. You know lots! Thank you.
Bruce: Thanks again. I find it rather fun
loutudor: Hope everyone is feeling good this morning...
MikeG: too time-consuming for me... maybe when I retire.
poohsdaddy: Good Morning all...
MikeG: got 5 more weeks in the boot... :(
Bruce: We have had eight grant proposals sent in this year. It is the most (2X) that we have ever had.
loutudor: We're going to chat about fundraising this morning...and anything else you wish...
UTE: Feeling good...but what does everyone think about taking the H1N1???
MikeG: so all we need now is the money to fund them.
Bruce: We should be announcing the winners of this year's grants in November.
poohsdaddy: How much ?? do we need to fund for this year ??
loutudor: We need $$ for grants...
Bruce: UTE, I have read that we probably do not need it because our immune system should have already developed some strong immunities.
murf: If you are going to get the shot for N1H1 do not get the first nasal spray release
loutudor: Does everyone get the regular flu shot?
MikeG: I do
loshimo11: Bruce, is this strong immune system due to KD?
Bruce: In yesterday's blog, I mentioned the swine flu. However, it is recommended that we have the pneumonia shot or booster if it has been more than five-seven years since the last shot.
poohsdaddy: I have an appt. for a "regular" flu shot for next week.
Bruce: No, it has to do with us growing old.... :)
loutudor: My son's insurance picked up the cost of the flu shot...
loshimo11: Well Bruce, then I'm superman.
Bruce: I asked my doctor and a pharmicist about it and explained my concerns with getting the flu with KD. Both felt I could have the vaccination, but both said they thought because I was older that I probably wouldn't need it.
loutudor: Good morning, Ed!
Bruce: Regulular flu shots are important ... in my opinion and the opinion of my neurologist.
Ed M: Good morning, everyone
MikeG: So, if we fund 2 grants at $25k each, we need about $30k more - right Bruce?
murf: morning Ed
Bruce: Our goal is to fund two grants this year. We currently do not have the funds available to award two, however. Another $20 grand would go a long way in helping our cause.
loutudor: Ed is going to help raise funding with his marathon coming up!
loshimo11: Good morning Ed.
loutudor: Has everyone seen Ed's website?
poohsdaddy: Not yet
MikeG: Ok, so does anyone have any suggestions on how we could raise some more money in this tough economy?
MikeG: what's the address?
loutudor: Go to the KDA website...there is a link to Ed's site
Bruce: The web site for Ed's upcoming run is http://www.razoo.com/story/Running-On-Empty-Helping-The-Kennedy-S-Disease-Association
Ed M: Bruce, you wer4e quicker than I!
Bruce: Only occasionally Ed
loutudor: Hopefully, many will contribute in support
MikeG: oh yes, I've seen it.
loutudor: Good picture, Ed!
MikeG: I need to fund it though... :}
Ed M: That was from the boston marathon, I was not as happy as I appear!
Paula: I know Mike & I will, but the biggest issue I see right now, is that we all have limited funds and we can't depend on KD members to contribute as much as we need.
MikeG: is this going to be one of your last runs Ed?
Bruce: Lou is also planning a holiday fund raiser email program. We know it has been a tough year for everyone, but we still feel that funding research is our only hope.
Paula: We have to find a way to involve more people who aren't directly affected by KD
Ed M: Mike, unless something changes and I feel better, yes. It is getting harder to finish those long runs
loutudor: What does everyone think of using e-bay?
loutudor: Welcome Y-Kid!
MikeG: I bet! I coldn't run 5 feet if my life depended on it!
yakima kid: Hello everybody
Bruce: Yakima kid, is that Yakima, WA?
yakima kid: You bet!
Bruce: Good apples up that way. We use to live in Seattle.
yakima kid: Harvest is on now
Bruce: We also did a lot of hiking in that area. Good times!
yakima kid: Cant find enough pickers
loshimo11: lou... Several years ago, with Terry's assistance, I was able to sell some high-tech toys and donated the funds. I didn't do it last year, but eBay is a really easy way to raise funds.
loutudor: Good news to hear!
Bruce: I believe the key point made earlier is that we just cannot rely upon KD'rs for support. We have to find a way to branch out to a larger audience.
loutudor: Would friends and family donate items for resale on e-bay?
loshimo11: I'm sure we all have items at home that we can sell thru eBay.
loutudor: We are seriously looking to begin an e-bay selling site again...
poohsdaddy: Our church festival raises money by having a good "raffle".... Maybe , we could try something similar. People buy tickets for "cash" prizes and many other donated items.
Bruce: Ed can probably comment more intellectually on this, but it appears that we are getting closer to a treatment, but there is still a lot of work that needs to be done before we can move to a trial.
yakima kid: I have never been able to transfer pictures of what i want to sell to e-bay
loutudor: We can help with the pictures...
loutudor: Ed, can you comment on treatment??
Ed M: Arouind Austin, which is a big running city, the newspaper has a sports writer that concentrates on running issues and news. Every year he writes articles on individuals with some disease running. THere was an artilce just last week on a local guy with Parkinson's disease. I have email him, but nothing has come from it. Maybe a more official contact (like a press release) from the KDA might be helpful. If such an article is written, it might be able to get the running community in Austin involved.
Bruce: We also need some fresh fund raising ideas (like ebay).
loutudor: It's being done, Ed
Bruce: Ed, let me know what you want to say and I will try to put it into a press release.
Ed M: I don't think there is a lot that is new - we know about IGF-1, for example.
poohsdaddy: And more people to get involved... to be successful
Ed M: Lou, great.
Bruce: Sorry, Lou
loutudor: Please comment on treatment...
MikeG: Consider yourself funded Ed.
Ed M: I think we are now waiting on the next trial -
yakima kid: It's a jungle out there. One 30 day period I over 70 piecec of mail wanting donations
Bruce: The recent Diane Merry chat is good reading for those that missed it. It really focuses in on some of the current research.
loutudor: All non-profits seem to be having trouble raising funds...just need better ideas
yakima kid: Eneybody ever get in on one of these trials?
Ed M: With regard to treatments, I think we are still looking at those that were discussed with Kurt when we discussed the possibility of the next clinical trial. That means a 2-3 year trial period to see if it is effective.
Bruce: Yahima Kid, many of the KD'rs were involved in the last trial.
yakima kid: How do I participate?
Ed M: When it is announced, the NIH will ask for volunteers
Ed M: You should get info from the KDA
Bruce: When the next trial is announced, the KDA will send out an email to everyone asking if they are interested.
Paula: Maybe we need an article or something that tugs at the heartstrings like the ones for children with diseases. It's heartwrenching to think of a child suffering, but when you get right down to it, is it any less painful to think of a grown man suddenly finding himself not able to do the things he planned and needs to do to support his family?
yakima kid: OK I'll look for it---I havent seen anything before, just after the fact
loshimo11: Paula... I totally agree with you.
poohsdaddy: If each KDA member could raise some of the $$ needed, the goal is less overwhelming!
loutudor: We use the baby pics on the e-mail...
Paula: Or the frustration of seeing his physical abilities wane - especially if he is a person who has always provided for his family by the use of his hands and muscles?
Bruce: Paula, yes, that is exactly the point we need to get across.
loutudor: We need to get more participation from extended family members...
Bruce: Maybe we should submit baby pictures of all of us ... then and now ... :p
loutudor: Not a bad idea...!
Bruce: Forget about that, it might scare people off...
poohsdaddy: Have there been any infomercials to inform the public about KD... Most people I talk to have never heard anything about it.
loshimo11: Bruce, we want them to help us, not scare them.
loutudor: We need to hit home with folks who have buried their heads in thew sand!
Bruce: Poohsdaddy, that is the problem. We are considered a RARE disorder.
Paula: Lou, I thought the baby email was perfect! I actually forwarded it to everyone in the corporation I work for, along with a personal excerpt about how KD has affected my family. I only got one donation out of over 300 emails - and that was from someone I don't know. I don't understand that.
loutudor: I am still seeing donations coming in from the Spring e-mail...
Bruce: And, because we are an all volunteer organization with little overhead, we just do not have full time staffs available to fund raise.
Bruce: We are always trying to find ways to cut costs so more funding is available for grants.
MikeG: it hit my Air Force group at the right time though - right during our reunion 2 people came up to me and handed me checks.
yakima kid: Thats what we have ti stress---low overhead!
loutudor: I think our extended family members are afraid to even talk about this...they don't know who may be affected in their families
poohsdaddy: I also followed Lou's idea; and sent the letter my friends and family by e-mail and those on Facebook.
loutudor: Thanks so much Pooh!
Bruce: Fortunately, Sean and Ed have come through several times for us. And, Murray's company comes through every year.
Bruce: Morning Ron
loutudor: Murray does a lot for us!
poohsdaddy: I haven't seen any money yet either
MikeG: Hi Ron
Ron: Hi you all.
loutudor: Hey Ron!
Ed M: Yes, I am always impressed with Murray's company
UTE: When people die they usually ask for donations to a cause in their obituary... maybe instead... still alive...I should ask for money instead of presents om my birthday and Xmas for KDA
Ed M: Hey, ron
loutudor: I like that idea Ute!
Bruce: Ron, are you beginning to see some colors in Lancaster? I miss this time of year up there.
Ron: Sorry to be late. Hope you all are staying healthy.
loshimo11: Going back to the eBay issue... Maybe we can contribute one of our Xmas gifts and resell it thru eBay.
Ron: Sure are. It has been in the high 40's the last couple of days.
Bruce: Loshimo11, I like that idea. It is simple, yet could be very effective.
loshimo11: I know that I get several items that I either don't want/like or can't use. I'm sure there'd be someone out there that may be interested.
loutudor: Everyone has "stuff" to sell...you get little for it at a yard sale...why not donate it using e-bay for KDA?
Bruce: Perhaps sponsor a 'white elephant' party in your neighborhood having people bid on items they might want (and also put them on ebay)
MikeG: I have an account with eBay and can help with the selling. If you have an item you want to sell send me a picture and description along with the price you want for it and I'll put it up for auction.
poohsdaddy: Ditto... I have many items that have never even bee opened and are still in the boxes that I could donate.
loutudor: We want them!
loshimo11: Thanks MikeG. I think that's exactly what Terry did for me a couple of years ago. I sent him all the info and he took care of it for me. The only thing I had to do was ship the items.
loutudor: We should be able to get a notice out on this e-bay money maker soon
loshimo11: Also, as an incentive, these donations may be tax deductible.
Bruce: Lou, we need to check out the tax deductible angle to make certain.
loutudor: Yes, I can't answer defitely right now...will check
loshimo11: I also think that if we mention KD (as a non-profit organization) in the eBay ad, it is a lot easier to sell (but that's just my opinion).
MikeG: yes, but it was hard on Terry to do it all - that's why we need several people working it.
Bruce: I am rather ignorant about ebay. How is shipping handled? Do we have to give a quote for shipping charges or is it included in the cost?
loutudor: It will be mentioned, definitely!
MikeG: either way you want to do it Bruce
poohsdaddy: Good question about shipping costs.
MikeG: some people include it in the price and state FREE SHIPPING. Seems to get attention more that way.
loutudor: Easily handled with upfront info for shipping...
Bruce: The USPO has those box rates ... no matter what the weight as long at is fits in the box. That might be helpful.
loshimo11: I believe we threw in the shipping costs since the items were not very big or heavy. However, it all depends on each individual item.
loutudor: The item is weighed and we know if it need special packaging...
MikeG: I believe that eBay even has listing fees reduced or dropped for charitable donations
loutudor: Yes, Mike, you are correct
loutudor: I've never sold, but have bought plenty on e-bay.
Bruce: Does that mean they all have to listed on a non-profit page or can individuals list them and still receive the break?
Ron: Just to give you all an update on me. I have been loosing weight lately. So, it was recommended that I get a feeding tube which goes directly into the stomach. This is a supplemental food source.
loutudor: Many peop[le play it like a game!
Bruce: Ron, WOW! I am sorry to hear that.
MikeG: Sorry Ron.
loutudor: Ron, I hope the feeding will help...
loshimo11: Ron... Sorry to hear that. I wish you a speedy recovery.
Bruce: Ron, what do they feel the reason is for the weight loss?
Ed M: I have to go, see y'all later.
loshimo11: Take care Ed.
MikeG: see you later Ed - take care
poohsdaddy: I've gaained weight Ron; wish I could send it all to you before Christmas.
loutudor: Bye Ed
Ron: Bruce--they are not sure but, I was eating quite alot but was still loosing weght.
loutudor: Ron, is it a swallowing problem?
MikeG: Bruce, the listing page on eBay has an option for charitable donations. You can donate anywhere from 10 - 100%
Bruce: Thanks Mike
loutudor: We would prefer %100:}
yakima kid: My older brother, 84, was just out on a feeding tube and also put on weight after loosing a lot.
loshimo11: Actually, I'd prefer 110%...
Ron: Yes Lou but just had a swallowing test with results saying not asperating food into the lungs.
loutudor: Thanks, losh!
loutudor: Good news, Ron
yakima kid: Keep up those exercises
poohsdaddy: Time for me to go... Best to all til next time...
loutudor: Thanks, Pooh
yakima kid: Breakfast is ready -Bye! and thanks
loutudor: It sounds like we should get e-bay rolling!
MikeG: me too - it's been a great chat. Hope we can raise some big money this quarter!
loutudor: Bye Yak!
Paula: Goodbye, all.
loutudor: We can do great things!
loutudor: Bye and thanks for particiapting all!
loshimo11: I also have to go. Please stay healthy and vertical everyone!!!
gary_kc: I got go, too. Bye all...
loutudor: Take care...
Bruce: Time for me to say Goodbye also. Take care and stay healthy.
UTE: I 2nd the healthy and vertical, so long
loutudor: Ron, please stay in touch...we all care
Ron: So long for now. Stay healthy till next we chat.
loutudor: Hey paula!
loutudor: I'm off for now...take care