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arhayw
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| Joined: | Sat Jul 24th, 2004 |
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Posted: Wed Dec 24th, 2008 20:24 |
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I looked into Charity Navigator's inclusion criteria and I'm guessing ARF doesn't qualify. Here it is:
What types of charities does Charity Navigator evaluate?
Because our goal is to help individual givers make informed giving decisions, we use the following guidelines to ensure that we are only evaluating charities that depend on support from individual givers:
Tax Status: We only evaluate organizations granted tax-exempt status under section 501(c) (3) of the Internal Revenue Code and file a Form 990. 501(c) (3) organizations are considered public charities and all donations to them are tax-exempt.- We don't evaluate 501(c) (4) organizations. 501(c) (4) organizations, like the Disabled American Veterans or the National Rifle Association of America, are allowed to spend a substantial portion of their revenue on lobbying our government and not every donation to them is tax-deductible.
- We don't evaluate charities that are exempt from filing the Form 990. Many religious organizations, like the Salvation Army, are exempt under Internal Revenue Code from filing the Form 990. As a result, we lack sufficient data to evaluate their financial health.
- We don't evaluate private foundations. Private foundations, like the Avon Foundation, receive the majority of their money from only one individual, family or corporation. This differs from the public charities that Charity Navigator evaluates. Public charities have a broad-base of support from the general public as well as variety of other funding sources. The IRS requires that private foundations file a Form 990-PF which differs from the document public charities file. This makes it impossible for us to compare the financial performance of private foundations to public charities.
Sources of Revenue: We require public support to be more than $500,000 in the most recent fiscal year. Because our goal is to help individual givers, we evaluate only those charities that depend on support from individual givers.
Length of Operations: We require 4 years of Forms 990 to complete an evaluation.
Location: We only evaluate charities based in the U.S. and registered with the IRS. However, the scope of a charity's work can be international.
Type of Programs: At this time we are not adding any hospitals, hospital foundations, universities, colleges, land trusts, community foundations, or PBS stations.
If the ARF does fit these criteria let me know and I'll pursue it.
Renee
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CFS FM hypothyroid 125D56 25D99 Ph1Jun04 25D99(June04)25D24(Apr09) Ph2Mar05 Ph3May06 abx brk Sep06 r/t KFTs Ph1Dec06 ModPh2Jul07 Ph1Jan08 abx brk Feb08 r/t >sxs Cytomel Calcium NoIRs occ outings covered
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Dr Trevor Marshall
Research Team
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Posted: Wed Dec 24th, 2008 20:36 |
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Well, we are an IRS 501(c) 3 charity, however, we can but dream of having $500,000...
Maybe in 2009 
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Martin78
Member in Phase 1
| Joined: | Sun Jul 15th, 2007 |
| Location: | Oslo, Norway |
| Posts: | 194 |
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Posted: Fri Dec 26th, 2008 01:07 |
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I believe that European socialdemocratic governments are more generous with funding NGOs.
We should concider establishing a European subsidary both because more and more european patients are given the treatment and because it will strenghten our global position.
I will, with Trevor's permission, investigate the possibilities of establishing a subsidary. irst I will gather more details about the inclusion criterias (and if members abroad can be included in the "member mass" needed to apply.
BR
Martin
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Sjøgrens Syndrome|Fatigue|wt loss|itch|night sweats|pain|ancle|legs|ches|irritat|depr| hypercalcemia|initial 125D 98|Probe Apr08|Valium| 25D30 Jan15.09|Ph1 Jan15.09|visit my site: http://www.youngsjogrens.com
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Lottis
Health Professional
| Joined: | Sun Jan 21st, 2007 |
| Location: | Sweden |
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Posted: Fri Dec 26th, 2008 12:23 |
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I am with you, Martin!
I also repeat my suggestion in doing a comparative cost example of a patient on current traditional treatment versus the MP treatment over a period.
Back to reflections on the China visit;
Dr Trevor Marshall wrote: The more you understand about human biology, the more you respect the complexity of the human body. That is why Engineers and Physicists, who are trained to deal with imponderable problems, often manage to form an overview which other scientists may not see...
I believe we can include the eastern philosophies among those dealing with imponderable problems.
It seems like The Chinese approach knowledge with a different kind of respect.
There are an endless source of wisdom that they have collected in China, and still use. Here is a link with examples;
http://www.brainyquote.com/quotes/category/chinese_philosopher.html
One quote from China tells us for example;
“The more you know, the less you understand”
I deeply admire the humble attitude they have towards learning!
/Lottis
Last edited on Fri Dec 26th, 2008 12:25 by Lottis
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HTN,LVH,CHF,arrhythmia,hypercholesterol,IBS? fibromyalgia?salivarystones,gallstones,ect...|15feb-07 init. 1,25D 37,5,|25-D 7,8(latest 15/2-07)| Ph1 29/7-08| Palliativ Meds. at the present; |Zoloft|NoIR's|covered up|disabled|
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Martin78
Member in Phase 1
| Joined: | Sun Jul 15th, 2007 |
| Location: | Oslo, Norway |
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Posted: Fri Dec 26th, 2008 23:03 |
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Lottis, lets discuss some kind of scandinavian/norther european collaboration over x-mas!
I understood that you finally found an MP-doc in Island??
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Sjøgrens Syndrome|Fatigue|wt loss|itch|night sweats|pain|ancle|legs|ches|irritat|depr| hypercalcemia|initial 125D 98|Probe Apr08|Valium| 25D30 Jan15.09|Ph1 Jan15.09|visit my site: http://www.youngsjogrens.com
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goyop
Member in Phase 3
| Joined: | Fri Aug 24th, 2007 |
| Location: | San Diego |
| Posts: | 77 |
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Posted: Tue Dec 30th, 2008 00:02 |
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With the myriad of things to work on and try to prioritize I greatly sympathize with Dr. Marshall the staff and volunteers.
The charitable status and marketing could be critical but only if that avenue is being considered as a major vehicle for fund raising. Successful charitable fund raising is only accomplished by very intentional and directed efforts. Most of us dream of the rich person who will hear about our spectacular solution for whatever problem we are fixing and they will write a gigantic check. This all but never happens.
It also seems that the vital work of the MP cannot advance on a budget of $50,000 per year.
So it appears that a strategic and forward looking plan should include a substantially larger budget and a fully staffed development position to raise and organize the raising of needed funds. All non profits come to this point if they want to increase their work and influence.
I was taught to be a part of the solution and not the problem so I again offer my assistance in these efforts. This year, 2008, the non profit which I founded and run was awarded four stars by Charity Navigator which is their highest rating. This in turn put us into the selection process of some foundations which we had no prior relationship. So while all of this requires years of planning and effort it gains momentum and allows the work to be done.
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Sarcoidosis Valley Fever| 1,25D-46| MP 10/07| Provigil trazadone| NoIRs| low lux home| limited outings covered up| 25D-18| ph2 Feb08|Feb 08 25D-12, Feb 09 25D-8
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Dr Trevor Marshall
Research Team
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Posted: Tue Dec 30th, 2008 13:41 |
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This year, 2009, we have Directed-fundraising for the first time. We will be funding the collaboration with West China Hospital, in an amount that still is being defined, and we will need to raise money to put the new software systems in place, so that we can continue to serve the growing demand here on the web.
My guess is that during 2009 we will be looking for upwards of one quarter million dollars to fund those initiatives.
If you have any ideas about how we could improve our fundraising efforts, then please send me a plan with goals, budget and performance benchmarks.
Our Board of Directors has recently been enlarged, bringing additional management and fundraising expertise, and I know they would welcome any concrete suggestions
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goyop
Member in Phase 3
| Joined: | Fri Aug 24th, 2007 |
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Posted: Wed Dec 31st, 2008 00:36 |
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I would be happy to assist in whatever way I am able. For me to present any plan I would need to know what your goals and budget are for the next several years. It would also be necessary to know who has what type of fund raising experience and at what level. (How much have people actually raised and in what circumstances). Do any of the board members or staff have any formal fund raising training. Are you willing to hire a director of development. (If no one on the board or staff have education and experience raising large sums of money then most non profits hire a development director once you get to $400,000 or so.)
So it is not as simple as me submitting a plan. I wish it were. The fund raising effort serves the master. The master is the strategic plan. The strategic plan comes from the board and staff and basically asks the question, "Where do we want to be in ten to fifteen years?" The master plan then breaks the strategic plan into smaller bites and the budget flows from that.
I am willing to assist in any of those steps if it would be helpful.
Greg
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Sarcoidosis Valley Fever| 1,25D-46| MP 10/07| Provigil trazadone| NoIRs| low lux home| limited outings covered up| 25D-18| ph2 Feb08|Feb 08 25D-12, Feb 09 25D-8
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Dr Trevor Marshall
Research Team
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Posted: Wed Dec 31st, 2008 02:49 |
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First, before we talk any more about these large sums of money, let me make it clear to those members who are reading this, and who have donated their $10, $100, and thousands of dollars, all your contributions are extremely valuable to us. We know that not all our members are capable of giving, and many are capable of giving only a very little. Not only do those very little amounts add up, but your support makes it clear that many, many, people rely on our work, and many, many, people contribute to that work. This is the very nature of a 501(c)3 charity, and every contribution is valuable, no matter what the size.
This year we were very slow at getting out receipts to everybody, and your Board of Directors is working to fix that ASAP. As you know, there has been a lot of 'dropping the ball' these last few months. So if you are wondering where your receipt has gone, please be patient. If you need a receipt right now, then please email me and let me know
Now Greg, as for strategic plan, I think that is better followed up off the main board, where we can detail some of the issues which might sound like jargon to most of our members. I will phone you about this within the next few days, if I may
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Dr Trevor Marshall
Research Team
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Posted: Wed Dec 31st, 2008 14:27 |
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I deleted some off-topic discussion here this morning. Please keep the discussion civil, and the focus on "my visit to China"
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wchshi
Health Professional
| Joined: | Sun Dec 21st, 2008 |
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Posted: Wed Dec 31st, 2008 16:01 |
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| Hi,Dr Marshall, I've got extremly busy in these days. sorry for the delayed response. I am going to back to you right after the new year (around Jan 4) to further discuss about our collaboration on the MP protocol.
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Dr Trevor Marshall
Research Team
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Posted: Thu Jan 1st, 2009 00:16 |
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Excellent,
I will be getting the site moved to a bigger server by 4th January, so that would be a good time for me, too
Happy New Year
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TikBitten
Member in Phase 3
| Joined: | Thu Mar 13th, 2008 |
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Posted: Thu Jan 1st, 2009 01:16 |
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Dr Trevor Marshall wrote: I deleted some off-topic discussion here this morning. Please keep the discussion civil, and the focus on "my visit to China"
Being from the NY metro area, not entirely sure what you're talking about, the thread seemed pretty civil to me...
On a more serious note, I was comptroller of a 501(c) for 8 years, with an annual budget just under a $1M and all the trustees and managers were volunteers. So I disagree entirely that the fund raising threshold of $500k requires a fully staffed position. And in light of the incredible effort put forth by yourself and MP staff of volunteers I was completely offended by his posturing to be compensated for his efforts in anyway shape or form, and for no other reason then the fact it's fund raising.
I wanted to make sure he knew exactly how I felt and in no uncertain terms...
From the bottom of my heart I would like to thank you for all you do. It is the result of your work, insight and effort that allows me to say for the first time in almost 20 years that I am truly looking forward to the prospect of a healthy and happy new year.
Best wishes for a health and happy new year to both you and your loved ones.
Most sincerely,
TB
Last edited on Thu Jan 1st, 2009 01:20 by TikBitten
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Dx:Neurborreliosis 8/05|25D=46 1,25D=62 10/07|Avoid Sun&VitD since 10/07|Started Ph1&NoIRs 3/08|25D=18 3/08|25D=17 6/08|ModPh2 6/08|Ph2 9/08 stopped NoIRs|Ph3 1/09|25D=13 3/09|25D=10 5/09|25D=11 7/09|25D=15 9/09
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Dr Trevor Marshall
Research Team
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Posted: Thu Jan 1st, 2009 01:32 |
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I was comptroller of a 501(c) for 8 years, with an annual budget just under a $1M and all the trustees and managers were volunteers
Ah - now I understand your interest in the topic of fundraising Thanks for sharing that with us
There are a number of advantages to this Community in being non-profit, quite apart from the 501(c)3 IRS tax benefits. As you would know, a non-profit is generally considered less partisan, and may well be in a better position to push change than organizations being funded by Pharmaceutical companies Also, interaction with Government agencies (like the FDA) has been considerably eased by our non-profit status
As you say, the down-side is that we have to rely on generosity and philanthropy of members and volunteers for our very existence I am extremely thankful to our members and volunteers, who have been helping us keep our head above water these past 4 years, and who enabled us to be so successful during 2008, not only at Karolinska, in April, the home of team Nobel, and thus of some of the most forward-thinking medical minds in the world, but also at the International Congress on Autoimmunity in Portugal in September, and then China in December.
Thank you all.
And many Happy New Years to you and yours,
Trevor
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goyop
Member in Phase 3
| Joined: | Fri Aug 24th, 2007 |
| Location: | San Diego |
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Posted: Thu Jan 1st, 2009 03:34 |
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For TikBitten and Dr. Marshall,
While I also did not feel that our exchange was harsh, perhaps it appeared that way to Dr. Marshall and of course I respect his desire to keep things civil. No worries.
Finally, to clarify, I am not certain what led you to believe I was "posturing to be compensated" especially when it says several times "I am willing to help in whatever way possible." Dr. Marshall already knows of my willingness to help without charge. I have done so several times already including a couple of charts for Dr. Marshall's China trip, and am contributing regularly to the Wiki project. Maybe you misunderstood my question about whether the board would be ready to hire a development director. I am not looking for work I am looking to help.
Happy holidays.
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Sarcoidosis Valley Fever| 1,25D-46| MP 10/07| Provigil trazadone| NoIRs| low lux home| limited outings covered up| 25D-18| ph2 Feb08|Feb 08 25D-12, Feb 09 25D-8
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Dr Trevor Marshall
Research Team
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Posted: Thu Jan 1st, 2009 03:40 |
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TB, Greg, now that we are on the same wavelength, please let's follow-up offline.
Greg, it is a while since we last spoke, and I haven't had a chance to personally thank you for these wonderful graphs (which I used in China):
http://project.mp-dev.com/doku.php?id=content:patient_data
TB, can you drop me an email, PM, or give me a call? We are going to need to gather together all the expertise we can muster as we move forward into the collaboration with West China Hospital over the coming months
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Dr Trevor Marshall
Research Team
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Posted: Tue Jan 6th, 2009 21:51 |
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Janet has finished the Transcript of the Keynote presentation at the World Gene Congress. You can download a copy from:
http://AutoimmunityResearch.org/transcripts/WCG2008_Keynote_Transcript.pdf
Thanks to all who worked so hard producing this transcript
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paulalbert
Board Staff
| Joined: | Fri Jul 16th, 2004 |
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Posted: Tue Jan 6th, 2009 22:32 |
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The transcript and video are reproduced here:
http://mpkb.mp-dev.com/doku.php/home:publications:marshall_conference_gene_2008
Paul
p.s. Trevor: if you send me your presentation I can cannibalize it for images.
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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wchshi
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Posted: Wed Jan 7th, 2009 02:55 |
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| Hi, Dr Marshall, sorry for the delay to contact you, i got extremly busy in approching end of the year (Chinese new year, half month away). I'll get back to you as soon as I can, hopefully before chinese new year.
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Dr Trevor Marshall
Research Team
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Posted: Wed Jan 7th, 2009 04:04 |
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Excellent, Dr Shi, Happy New Year!
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