SCINetUSA/JustADollarPlease Fundraising Tools

[Jim]

Below are logos and a flyer that can be used for fundraising.
I also have large color JADP banners that Leo had made. I will mail if you want to use.

If you have recently held a fundraiser, please tell me about and it ill be featured on the JADP website.


Websites-
http://www.scinetusa.org/
http://www.justadollarplease.org/
http://www.scibracelets.com/

Facebook-
http://apps.facebook.com/causes/269542?m=4ffa5b46

Please don't alter any images, we want to have the same message. Any questions, email me- jimbenn@rci.rutgers.edu

[Jim]

I now have the big Just A Dollar Please Banners. If anyone wants to use one for a fundraiser I will send it to you.

[Corinne Jeanmaire]

hi Jim, or anybody else,
do you have any powerpoint/ or any other document that would show, very clearly:
- why SCI can and should be cured
- why research and clinical trials are needed
- the current status of research and the promising therapies
- what's at stake, from a financial, a societal, a human viewpoint
==> why fund?
If so, can you share in this thread ? i think such documents should be available on global level and could then be adapted on regional/national level and customized depending on purpose.

thanks in advance! and keep on the good work for scinetusa!
Corinne

[0xSquidy]

You should really get some paypal, moneybookers etc support going with your website. That is so basic.
Nice work btw

[Jim]

Corinne,

I have recently begun recording Dr. Young's lectures and powerpoint presentations. We plan to use these to bring about more awareness and raise funds. If you have any specific suggestions, let me know.

*ATTENTION ALL*

A talented member of CC has redone The JustADollarPlease website. When it goes live, I will be sending out an eBulliten to announce it's launch. We want everyone to forward this eBulliten to all of your contacts, explaining why supporting SCINetUSA is important to you.

If you have not been receiving eBullitens, please send me your email- jimbenn@rci.rutgers.edu
If you include your address, I will enter you in to our database. (address/level of injury)

Let's get these clinical trials going!

[khmorgan]

Originally Posted by Jim

I have recently begun recording Dr. Young's lectures and powerpoint presentations. We plan to use these to bring about more awareness and raise funds. If you have any specific suggestions, let me know.

Sorry if this is somehow sacrilege, but if Dr. Young could make at least one video presentation that hints at the commercial profitability of a cure, perhaps some company like J&J might help out. Personally, I don't care if someone makes a buck off a cure. Someone else like wheelchair makers will lose one.

[Wise Young]

Originally Posted by khmorgan

Sorry if this is somehow sacrilege, but if Dr. Young could make at least one video presentation that hints at the commercial profitability of a cure, perhaps some company like J&J might help out. Personally, I don't care if someone makes a buck off a cure. Someone else like wheelchair makers will lose one.

khmorgan,

I speak to many companies. Many companies realize the commercial benefits of a cure for spinal cord injury. I have been talking to companies (and indeed serving on some of their advisory boards) for years, including Johnson & Johnson. Ten years ago, they were not interested at all. However, they are now very interested for the following reasons:

1. The MS market has taught them that even small populations of patients may generate major profits. For example, companies are now charging $24,000-$30,000 per year for interferon drugs and copaxone. The recent FDA approval of Ampyra is also turning their heads. It is a multi-billion dollar market that would justify their investments.

2. Many companies are also realizing the importance of spinal cord injury as a proof-of-concept condition that would garner a great deal of attention, if they are successful to producing a drug that regenerates or remyelinates the spinal cord. They are not blind to the fact that FDA approval would be easier for other conditions if it is shown first in spinal cord injury.

3. The first demonstration of an effective therapy for chronic spinal cord injury will set off a global race to produce "me-too" therapies. All the companies know that once one therapy has been approved by the FDA, subsequent therapies are much easier to approve. It just requires the demonstration of safety and equivalence. The risk is low.

Thus, I believe that we have begun to overcome the first obstacle that has traditionally prevented investment of companies into spinal cord injury research. Today, dozens of large pharma companies are beginning to invest seriously in spinal cord injury research. These include Novartis, Galaxo-Smith-Kline, Pfizer, Johnson & Johnson, Biogen, and others. The availability of clinical trial networks to test their therapies efficiently will also encourage them. Finally, of course, if our current clinical trials were to produce a winner, there will be no dearth of companies trying to muscle their way into the field of spinal cord injury.

By the way, FDA approval is not the only obstacle. Market acceptance is a major obstacle. Let me give you just one example to illustrate. About 6 years ago, Pfizer made the headlines because they were doing clinical trials with an inhaleable form of insulin and the trials showed that the treatment was safe and effective. Everybody thought that this was a great idea. FDA approved the drug, called Exubera, in 2006. The exuberance was overrated. In 2009, Pfizer withdrew the drug due to lack of interest (Source)

There is a third obstacle and that is whether the treatment will be covered by insurance. This is perhaps the hardest battle of all and one that requires the participation of the community. Embattled insurance companies and major healthcare providers are watching their bottom lines very carefully. If they perceive that a product does not provide significant advantages of safety and efficacy over existing products, they will not pay for the product. They may see the problem differently from the community. For example, they may think that a treatment that improves 1-2 segmental levels is not worthwhile but we all know that this is not true.

Finally, we should remember that we are just coming out of the deepest recession that this country has known since the Great Depression. 2009 was the hardest fundraising year in memory and 2010 does not portend to be much better. Almost every foundation and charity in the nation have lost as much as half of the value of their endowment and interest rates have shrunken to near zero. Hundreds of billions of dollars of non-profit funds that would normally be use to support research and clinical trials have disappeared. The same is true of biotech investors. People are just not willing to put money out or to take risk.

Nonetheless, we have initiated a new fundraising drive during this period. This is because we cannot afford to wait to get the clinical trials going. In fact, I am going ahead to initiate the clinical trials even before the money is in house, hoping that the money will come in soon. We will have to delay the trials if the funds do not come in.

Our idea is that everybody in the spinal cord injury community can afford a dollar a day. Spinal cord injury affects more than a million families in the United States alone. If every family donates a dollar a day, this would be more than triple the amount of funding spent on all of spinal cord injury research in the United States today. It would fund the clinical trials.

If the government and companies were to come in and help out with grant and investments in therapies, that would be great and cream on the pie. We have been waiting too long for some sugar daddy to bail us out when we could have done this ourselves a long time ago. Let's do it now. For a dollar a day, we will kickstart the decade of the cure.

Wise.

[lepups3]

What we need is a celebrity to get on board for our cause. I've written to ABC to see if they would do a public service announcement because of the paraplegic story they have on Desperate Housewives. I've also written to Oprah and Dr. Oz but to no avail. We need to get someone well known to spread the word.

[keeping on]

Why not Sanjay Gupta or Dahli Lama. They both seem to be poitive about stem cells. On CNN this morning, both were on and spoke positively about stem cells. We , the proup that wants this more than anybody have our own voices and you have advocated yours. I thank you for your efforts; man it's coming.

t.J.

[keeping on]

Wise, I hope and PRAY that your trials givve all the above. The snow is cascading and the snowball is growing; I feel. Your efforts are so greatly appreciated by all of us.
Just had to commecnt on your post.

T.J.