sci research poll

[DA]

sci research to find cure.

[Sue Pendleton]

DA, you're getting repetitive here. How about skipping the opinion polls for awhile and find a researcher down in Texas and bring us back a report of what is being done down where you are? It's amazing how talkative some scientists are on the phone or in person when asked to talk about their work.

[DA]

i am very surprised at you of all people not to see the importance of this poll. the results of this poll could shake the entire year of 2002.

[Wise Young]

DA,

I think that you should compare SCI research specifically against a field with similar funding, such amyotrophic lateral sclerosis, muscular dystrophy, cerebral palsy, head injury.

Spinal cord injury research is riding a moped right now on the highway of life. It is true that some groups are walking and we are lucky to have a moped. But the engine is small, we have to pedal hard, and we are not going very fast.

Asking people to compare spinal cord injury research against all other research is like asking people to compare our little moped against cars. What is being spent on spinal cord injury research today is pocket change for AIDS or cancer research.

I posted something a little earlier, about Bristol-Myers spending $2 billion for 20% of Imclone because it has a drug may help colon cancer resistant to another chemotherapy. In that one deal, for 20% of not yet FDA-approved cancer drug, one company spent more money than probably has been spent in the entire history of spinal cord injury research!

Wise.

[Sue Pendleton]

DA, want to explain how this poll will rock all of 2002? I know, I'm asking for an epic from aliens here but... http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

I agree with Wise. There should be a chart on the NIH website that shows the top 50 conditions and what the NIH spends on each. Find something close to SCI and then reword your poll.

[Webber]

Originally posted by Wise Young:

DA,

I think that you should compare SCI research specifically against a field with similar funding, such amyotrophic lateral sclerosis, muscular dystrophy, cerebral palsy, head injury.

Spinal cord injury research is riding a moped right now on the highway of life. It is true that some groups are walking and we are lucky to have a moped. But the engine is small, we have to pedal hard, and we are not going very fast.

Asking people to compare spinal cord injury research against all other research is like asking people to compare our little moped against cars. What is being spent on spinal cord injury research today is pocket change for AIDS or cancer research.

I posted something a little earlier, about Bristol-Myers spending $2 billion for 20% of Imclone because it has a drug may help colon cancer resistant to another chemotherapy. In that one deal, for 20% of not yet FDA-approved cancer drug, one company spent more money than probably has been spent in the entire history of spinal cord injury research!

Wise.
Dr. Young, I really liked your analogy concerning the mo-ped on the highway of life. I remain optimistic, even with the current funding, that clinical therapies will be available and applied within the next 3-5 years. Hopefully, more private and federal funding will be available, and again I remain optimistic. I really am amazed at what I have learned the past few weeks concerning research being done and that something will be available, either here in the USA or abroad that will produce great benefits for sci. My greatest concern is the amount of personal effort from each sci individual that will be required for functional return. It ain't gonna be easy, just be prepared to put forth the effort when the time comes.
LJ

[SKYCO]

I think Dr. Young hit it on the head,it all boils down to money.

[Chris Chappell]

asking / debating the same thing over and over let's each raise $1,000 this year, now, 2002 and contribute it towards helping ourselves.

Talk is cheap.

[angel7]

Dear Sue and Dr. Young:

If each member of this community did raise $1,000 in the year 2002, what research group would be in best to invest in?

To All Members of this Forum:

I am more than willing to try and raise $1000 in 2002. I would like to set a friendly challenge to all to do the same. We could donate our money to the group recommended by Sue and Dr. Young. Any takers?

Deb

[Tara]

I will up your ante to $2000 for the year. Lets go- why wait around for someone else when we can help ourselves. Isn't everyone one here always complaining about having to depend on others!?!?!?
If everyone threw in a little bit, we could move things ahead quicker.

[Sue Pendleton]

Yea Debbie! Several of us have been saying the same thing for the last year or two. If we each raise a thousand dollars we can fund a lot of research. This does not include those who work on state laws. I'm talking everyone. I give to both the SCIProject at Rutgers and the Christopher Reeve Paralysis Foundation. That's me. Other organizations are equally worthy and depending on circumstances someone may feel better giving to the Miami Project, the Danny Huemann Foundation, Kent Waldrep Paralysis Foundation, Paralyzed Veterans of America (they have a sperate fund for research), etc.

If you aren't sure who to give to I suggest looking up the appropriate website and emailing or calling the charity to ask for an information brochure and that it include how much goes towards administrative costs (as a percentage of doantions) and if all the money goes to research or to that and quality of life grants also.

I'm going to (try and) cross post this to the Fundraising Forum because there are a ton of wways to raise the money. And there are also a lot of organizations who will work with you so that donations you collect are tax deductible for the givers.

[Sue Pendleton]

Sorry about copying everythingg over here, Steven. I did try to just copy the fundraising posts. Not sure why the ones I left unchecked showed up too. http://sci.rutgers.edu/forum/images/smilies/frown.gif

[Steven Edwards]

Originally posted by Sue Pendleton:

Sorry about copying everythingg over here, Steven. I did try to just copy the fundraising posts. Not sure why the ones I left unchecked showed up too. http://sci.rutgers.edu/forum/images/smilies/frown.gif

Don't worry about it, Sue. You can only move entire threads around at one time. You can then delete topics from the thread to keep only what you want, but that takes a while. http://sci.rutgers.edu/forum/images/smilies/smile.gif

-Steven

[Chris Chappell]

therefore I'm in. How about $2002 in 2002? I'm sending my $$$ to Wise's lab. This is in addition to what I'm helping raise for Craig's research.

C'mon, who else is in?

I just calculated, roughly, that with 1,300 members at $2002 we could raise approx;$2,600,000!

[This message was edited by Chris on January 26, 2002 at 01:23 PM.]

[cheesecake]

Chris, Many on this forum are not in a position to donate directly. I unfortunately am one such person. My approach is different because of this. I educate friends, family, etc about SCI research. I ask that all holiday and birthday gifts go to a research lab. I educate others as to what research is happening at what lab and show them the cost benifit ratio of funding SCI research. When something exciting appears on this site, I cut/paste and forward it on to all in my address book. I have forwarded the Where Donations to Reutgers Go to many. It outlines the efforts and projects at the SCI Project under Dr. Young. You can locate it on the Fundraising Forum.

I urge others who may not be able to donate directly to think creatively and to come up with ways to help research move forward.

[Sue Pendleton]

Cheese knows her stuff and can help immensely by spreading her knowledge around. But many groups can help you raise money and do so in fun ways and also in ways that teach values to kids. How about having your church put on a spaghetti dinner? Churches are tax exempt by their very nature and a person can write off on taxes everything but the exact cost of the dinner. Ex: adults $10, kids 4-12 $6, cost of dinner$3. Sp $7 of adults and $3 od kids tickets are tax deeductible and can be sent by the church to a SCI organization.

Cubs scouts and brownies who sell cookie dough door to door with Mom, Dad or scarey big bro in his big bad power chair with cell phone tagging along. Honest, big tubs of frozen cookie dough is a big money raiser these days.

Raffle off a donated item through a standing charity. I think it was the Michigan PVA chapter that sold off an orginal mint condition Willy's jeep. Since the jeep was donated it was a write off for the car lot that donated it and very little raffle money went to paying for printing tickets and flyers and most went to SCI research.

The ever popular car wash with space and water donated by your favorite gas station or wash it yourself car wash place.

Now is the time to get together with your 4-H clubs, Lions, Elks, Rotary, Moose, etc clubs and talk about a food booth for your county fair and state fairs come July and August. I know NSCIA chapters have raised money to build accessible toilets at state fair grounds. If you already have those why not sell corn dogs for research?

It's too late for selling flowers for Valentines Day but how about Easter Lily plants? Mimosa cuttings for International Womens Day (I'll let a European explain), Mother's Day cookies bouquets, Father's Day initial imprinted golf balls done at the local pro shop or country club for a weekend? Everyone knows someone who can donate something, it just takes thinking of who and what and getting the word out. Help will arrive.

[PN]

I was wondering if it is OK to do double or triple postings on a single subject? This post started on the Research Forum and now it appears on the Fundraising Forum as well. I would prefer to read this post on the Research Forum, and not have to come over to the Fundraising Forum and read what others are saying.

PN

[Wise Young]

Since that many people may not know what our Center is and does, let me explain a little about the budget of the W. M. Keck Center for Collaborative Neuroscience at Rutgers University. I am the Director of the Center and formed it in 1997 when I moved from NYU Medical Center to Rutgers.

Our Center's current annual operating budget is about $1 million per year, excluding faculty salaries which are paid by the University. I don't have the numbers in front of me but I will give some rough estimates of what our budget is used for.

About half of our budget is salary and fringe benefits for 9 full-time research staff and 3 administrative staff members, excluding faculty. Our research staff includes 3 full-time technicians who take care of our animals and 6 senior technicians who manage our surgery, culture, imaging, molecular, and impactor facilities. The Center has five full-time faculty members. We have about a dozen postdoctoral fellows and graduate students. About a dozen undergraduate students do research in the laboratory during the year and more during the summers.

About 25% of our budget and effort goes into training other laboratories, providing our SCI Impactor (a rat spinal cord injury model), our rat gene chip (NGEL), cell culturing, imaging, and surgery services. The remainder of the budget supports our animal care and laboratory costs for our experiments.

At the present, about a third of our funds come from private donations (SCI Project), a third are research grants from industry or foundations, and a third are research grants from federal or state sources. Our industry grants are for testing spinal cord injury therapies for companies who do not have in-house laboratories that do spinal cord injury research or who would like confirmation of their findings. This is a somewhat unusual distribution because most U.S. laboratories are based on 75% federal research grants and the remainder comes from foundation or industry grants.

Rutgers University contributes a great deal by paying the salaries of the senior faculty and the University supports the infrastructure of the Center in innumerable other ways. The construction of the laboratory was funded by the W. M. Keck Foundation in 1999.

Miscellaneous expenses such as books and journals, student travel and other expenses are supported by donations from our faculty and staff. For example, whenever I do any consulting work, I ask the companies or firms to pay into an account that support our students.

We created the SCI Project as a way for people to support spinal cord injury research in the Center. People can donate directly to SCI Project through a secure web site and the donation is tax deductable and devoted to SCI therapy research. SCI Project Donation Page (https://secure.entango.com/donate/z7amHUbTiNZ)

Patricia Morton is our Director of Planning & Development for the Center and she can provide you with probably more accurate information. She is a caregiver and very knowledgeable about spinal cord injury and fundraising. By the way, she helps coordinate the Quest for Cure group that has successfully obtained passage of state legislation funding over $21 million of spinal cord injury research per year. The SCI Project telephone number is 732-445-6573.

Wise.

[Carl R]

thanks Dr. Young, maybe you could put a link to that information on the front page where everyone could see what the center is all about.

I must admit that I am amazed that your budget is so small. I would have guessed that it would take 5 or 10 times that amount on an annual basis to pay for what you have said is currently going on in your lab.

* hypothetically speaking Dr. Young, what would you do and what kind of a difference would it make if your budget was $5 million annually?

[angel7]

Carl,

I take it that Garym was the plegic that didn't make it out of the WTC. If so, then that is a perfect name for the fund. However, I believe the money we raise should go for research that would be beneficial for all SCIs, i.e. acute, chronic, complete and incomplete. Therefore, we could let Dr. Young parcel it out to the appropriate place. I would hate for us to vote on a project that would only benefit one type of injury.

What does everyone think?

By the way, rdf, I don't know about everyone else but I am dead serious about raising between $1,000 to $2,000 this year to help get me out of this chair.

Deb

[cheesecake]

Deb-,
GaryM was an active member of the Spinewire, Cando, and Cure Paralysis Now Communities. He died unexpectedly last August. He was a fierce advocate for SCI Research. There was a running joke that Dr. Young was gonna name rats after GaryM and DA. He is a member of our community who is sorely missed.
Ride em Cowboy!

[angel7]

Cheesecake,

Thanks for the clarification. I am fairly new to this site so I didn't know. Meaning no disrespect to GaryM, I think the country would better identify with the plegic that didn't make it out of the WTC. The thought that due to an injury, that should already be cured by now, caused two people to die needlessly is something I think the country would feel empathy for and thus donate money in that person's memory.

Any thoughts?

[bilby]

The only organization I give to is the SCS. I know a lot of people have issues with the person running the organization, but it's the only one 100 percent dedicated to finding a cure for chronic paralysis.

Its annual budget is equal to yours DR. Young.

bill

[rdf]

SueP, why'd you delete my post? If you didn't care for the content, a simple post of your own stating your opinion would suffice.
-Bob

[Sue Pendleton]

Bob, I didn't delete any posts. Did the post come up on the thread and then disappear or disappear once you clicked on "post now"? I have had posts disappear (long ones too!) after clicking on "post now" when the cyber monster eats my words before they show up.

Please repost whatever you did the first time. I may move a thread to a more apt forum but without a really good reason, and concurrance from others, I do not delete posts. I am a firm believer in free speech even when I don't like what is being said.

[rdf]

I posted on the original thread, when it was in the CURE forum.

[Wise Young]

Bilby, I respect your decision to give only to SCS.

Carl R, as you know, I have been reluctant to post about my own Center on these forums because that is not the reason for the forums. This particular forum is meant to share ideas about fundraising and fuding. I usually post information about what my group does only in response to a direct request from people.

PN, we have relatively few numbers of forums but the purpose is to organize the postings so that others can read them. We already have over 15,000 postings on these forums. If these posting are organized into specific topics, they can be more easily read and searched. Sue tried to encourage people to post fund-raising responses to the Fundraising Forum by initially copying the thread to the Fundraising Forum without closing down the other one. However, this led to the confusion of two identical titled threads, and worse, two identical polls. So, she elected to close the one in the Cure Forum.

It is important that people try to post on topic and in the appropriate forum. If somebody has an off-topic comment, they can easily start a new topic. Likewise, it would be good if people posted to the appropriate forums. Thanks.

Wise.

[bilby]

DR. Young-

I'll donate to your research group in the future. I was just saying what i've done in the past.

Like the SCS you do a lot of work on chronic injuries, that's the branch of research I want to invest in.

bill

[PN]

Thanks for the explanation, Dr. Young. I would also like to say that Sue is doing a good job as a moderator on this forum.
PN
Addendum: I should have said the research forum.