Has anyone appealed to celebrities/philanthropists to help us?

[Debbie23]

Sounds like a good plan of action. Thank you once again for your efforts in providing a template for me to offer my thoughts, i'd never have had a clue to how to get started you inspired me. I thought I'd leave it with other people to do with it, I.e. Editing, re-writing and sending on, as they wish, which may sound awful! But I'm wiped out after writing it. And I'm going to need to be careful over the next few weeks because of somethings coming up for our family. So if other people could organise the sending of whichever version to wherever, and whenever, I would be very, very greatful.

Wherever people wish to take it further is fine by me. Someone else may come along and tweak both into an even better version! Mores the better Imo. The more input the more meaningful it is likely to be.

 

[redviper]

Sounds like a good plan of action. Thank you once again for your efforts in providing a template for me to offer my thoughts, i'd never have had a clue to how to get started you inspired me. I thought I'd leave it with other people to do with it, I.e. Editing, re-writing and sending on, as they wish, which may sound awful! But I'm wiped out after writing it. And I'm going to need to be careful over the next few weeks because of somethings coming up for our family. So if other people could organise the sending of whichever version to wherever, and whenever, I would be very, very greatful.

Wherever people wish to take it further is fine by me. Someone else may come along and tweak both into an even better version! Mores the better Imo. The more input the more meaningful it is likely to be.

Couldn't agree more!

 

[redviper]

I've done some early research and all I could find that was semi-relevant was who Mr. Cook challenged to the ice bucket challenge last year....

"Cook is also challenging his contemporaries to do the same, extending the torture to Disney CEO Bob Iger, who also sits on the Apple board, as well as Dr. Dre, who joined Apple as part of the Beats acquisition. Cook said he knew Dre liked to make videos. ZING"

Ok, so Bob Iger and Dr. Dre.......well, those guys should be MUCH easier to get a hold of

 

[Snowdrop]

@Snowdrop - Like I mentioned in my post to Gerald, I think we should be taking a two track approach to our outreach to Mr. Cook, as I agree with you that it is critical "to strike while the iron is hot". The first would be the letter itself, which we will hopefully receive some more feedback on from other posters over the next 48-72 hours. After that we should probably just try and reach a consensus on the final letter and move on.

Simultaneously, I think we should be researching individuals or board members that Mr. Cook is most likely to turn to for advice on how to divide his charitable donations. Who are these people? Has some sort of committee already been established? Did he have advisor's working with him on his previous charitable endeavours? These people would likely be far more easy to get in contact with and probably give us a much better chance of reaching Mr. Cook. Just food for thought.

I also think we should give some consideration to asking if Phoenix Rising would sponsor the letter, as the optics for outreach would likely appear better coming from a reputable non-profit organization as compared to a single individual e-mailing multiple people from Mr. Cook's team.

When I initially thought about the need for reaching out to the private sector I felt that it would not be unreasonable to persist a little without becoming stalker like in the request. That is to say if we don't get a response on the first go I wouldn't consider that a no immediately. Also, Ms Fairchild seems to have stepped up to our aid. She previously was an AIDS activist and therefore probably knows a thing or two about approaching very busy/powerful/rich people. The only question then becomes how to approach Ms F.

There is one other thought about the letter. Perhaps it might be good to include some short message to the effect that there is a lot of misinformation regarding what ME is that has caused PWME to suffer and linger without help or funding. Something along that line.

Is there any possible link we could provide that would be a 1 minute quick guide to where ME is at presently?

 

[redviper]

When I initially thought about the need for reaching out to the private sector I felt that it would not be unreasonable to persist a little without becoming stalker like in the request. That is to say if we don't get a response on the first go I wouldn't consider that a no immediately. Also, Ms Fairchild seems to have stepped up to our aid. She previously was an AIDS activist and therefore probably knows a thing or two about approaching very busy/powerful/rich people. The only question then becomes how to approach Ms F.

There is one other thought about the letter. Perhaps it might be good to include some short message to the effect that there is a lot of misinformation regarding what ME is that has caused PWME to suffer and linger without help or funding. Something along that line.

Is there any possible link we could provide that would be a 1 minute quick guide to where ME is at presently?

I kind of softly attempted to touch on the subject here without sounding too bitter

"You would think such a debilitating disease would receive significant funding from government, but in 2014 the National Institutes of Health (NIH) awarded $6 million in funding for ME and $14 million in funding for male pattern baldness. This is just one of the insurmountable hurdles that our community is currently facing, as a lack of diagnostic testing has allowed certain interest groups to discredit the suffering of ME patients, despite undeniable evidence to the contrary."

However, I'm definitely open to amending/changing that part if you want.

As for any link that would provide a quick guide to where ME is presently at, I'm not sure. However, I'm sure one of the members here knows of a resource, so perhaps someone will offer a suggestion over the next couple of days. If not, we can make a direct appeal in the main forum for such a resource.

 

[Debbie23]

I kind of tried to weave that thought too with;

"Such patients beforehand often spend years, and even decades, trapped without hope of recovery or sometimes even understanding, while they suffer neglect or even abuse because they have the misfortune to suffer from a neurological disease which isn't currently widely understood beyond specialists in the disease. "

If anyone feels it can be made stronger or have more of an impact if edited differently or made less wordy and more to the point. Please feel free to re-write.

 

[redviper]

Yea, I really like yours too, @Debbie23. It's a delicate balancing act, no question. I'll be interested to see what others have to say.

@Snowdrop - Would you like me to draft a brief introduction to Ms. Fairchild that you can send? Something basic that highights her work with the AIDS epidemic and how the ME community is the new frontier for marginalized chronically ill patients. If you would prefer, you could also draft the letter and I'll proof-read it and offer any feedback that I may have.

 

[alex3619]

Ms Fairchild seems to be very familiar with ME and CFS and related issues. I wonder if a letter to her might be better if it focused on how she can help us and why we feel she is needed? She probably knows more about the illness than the majority of patients.

 

[redviper]

Ms Fairchild seems to be very familiar with ME and CFS and related issues. I wonder if a letter to her might be better if it focused on how she can help us and why we feel she is needed? She probably knows more about the illness than the majority of patients.

Yea, I think that is a good approach. I think it's important though that the letter is fairly brief and direct, as compared to a more lengthy emotional plea that she just may not have the time to read.

 

[redviper]

At this point I've done a fair amount of open-source research and have been unable to find any charities directly linked to Mr. Cook, it seems he has done all (or at least most) of his charity work under the Apple banner. There are a couple instances of him working with private charities or organizations, but it's important to distinguish that it appears that none of these were his charities. Unfortunately that will make the outreach even more difficult.

I'll do some research tomorrow and look into the partner of Tim Cook, hopefully that will provide one or two promising leads or e-mail contacts.

 

[Snowdrop]

beyond specialists in the disease.

Hi @Debbie23

I'd just insert the words 'a few' between beyond specialists. Or something along that line that indicates we do not have a designated specialist group of DR's.

 

[Debbie23]

Hi @Debbie23

I'd just insert the words 'a few' between beyond specialists. Or something along that line that indicates we do not have a designated specialist group of DR's.

Good point! I'll edit the Main post.

Many thanks again to Red Viper, you are doing some great research work by the sounds of it!

 

[Snowdrop]

At this point I've done a fair amount of open-source research and have been unable to find any charities directly linked to Mr. Cook, it seems he has done all (or at least most) of his charity work under the Apple banner. There are a couple instances of him working with private charities or organizations, but it's important to distinguish that it appears that none of these were his charities. Unfortunately that will make the outreach even more difficult.

I'll do some research tomorrow and look into the partner of Tim Cook, hopefully that will provide one or two promising leads or e-mail contacts.

My understanding FWIW (because it's all second hand info), is that Tim Cook like his predecessor Mr Jobs, is very hands on in terms of involving himself in directly responding to people who contact him. I'm somewhat more optimistic about getting a good response. The thing about contacting him is knowing the type of appeal that would be best suited to him. For this I have no answer.

Thank you for all the writing and research thus far redviper. As to the letter to Ms Fairchild, my mind isn't organised enough to put one together but when I can see something in front of me I can (ever so slowly) form some ideas about it. So I am asking you if you can do that if you think that it is a good idea.

Take care,
SD

 

[Lou]

Yea, I think that is a good approach. I think it's important though that the letter is fairly brief and direct, as compared to a more lengthy emotional plea that she just may not have the time to read.

Completely agree. Later, if she interested and asks, we can furnish all the details she may require.

 

[redviper]

My understanding FWIW (because it's all second hand info), is that Tim Cook like his predecessor Mr Jobs, is very hands on in terms of involving himself in directly responding to people who contact him. I'm somewhat more optimistic about getting a good response. The thing about contacting him is knowing the type of appeal that would be best suited to him. For this I have no answer.

I did some research and gave this some thought before I wrote the letter. Basically what I found out was that he's always been fairly charitable but wants to ensure his fortune is allocated to the most deserving causes. He's openly homosexual and has bravely dealt with some ridiculous criticism for coming out and talking about his sexuality. He also mentions how one of his main personal goals left in life is to help finance/guide his grandson through university. So I tried to directly appeal to the fact that he is a man of conviction willing to help marginalized groups. The most prominent theme in my letter though was the fact that this disease can strike anyone, at any time, even the young. I was hoping that would resonate with a man with a young grandson that he wants to see succeed in life. It's one of the reasons I included my age and profession in the letter, I hope when (if) Mr. Cook reads the letter he understands that something similarly awful could happen to his grandson or some of the young successful professionals he works with.

I don't know if it's necessarily the best approach, but hopefully it resonates.

 

[redviper]

This is an interesting piece of information from a 2011 Wall Street Journal article, I'm going to let this sit for a little while and then re-read the letter I wrote, there is probably a way to incorporate this information.

"As tough as Cook was reputed to be, he was also generous. He gave away the frequent-flier miles that he racked up as Christmas gifts, and he volunteered at a soup kitchen during the Thanksgiving holidays. He had also participated in an annual two-day cycling event across Georgia to raise money for multiple sclerosis; Cook had been a supporter since being misdiagnosed with the disease years before. "The doctor said, 'Mr. Cook, you've either had a stroke, or you have MS,' " Cook told the Auburn alumni magazine. He didn't have either. His symptoms had been produced from "lugging a lot of incredibly heavy luggage around.""

 

[redviper]

I've also been doing quite a bit of research into the partner of Tim Cook as a potential outreach option. So far the research has included an interesting combination of legitimate news sources and gay gossip websites. Anyway, there are a couple of critical facts to know and consider.

1) He's gone to tremendous effort to keep the identity of his partner private, even going so far as asking news organizations to respect his privacy and not report the name of his partner.

2) Does this mean we should rule out reaching out to his partner as it could possibly offend him, maybe? Or is it a strategic advantage that very few other charitable causes can use this strategy.

If I had to guess, the research seems to point towards the guy highlighted in the link below as the most likely candidate. I could likely track down his contact information if people think that's a risk worth taking.

http://shanghaiist.com/2014/11/08/chinese_media_speculate_that_apple.php

 

[redviper]

This is an interesting piece of information from a 2011 Wall Street Journal article, I'm going to let this sit for a little while and then re-read the letter I wrote, there is probably a way to incorporate this information.

"As tough as Cook was reputed to be, he was also generous. He gave away the frequent-flier miles that he racked up as Christmas gifts, and he volunteered at a soup kitchen during the Thanksgiving holidays. He had also participated in an annual two-day cycling event across Georgia to raise money for multiple sclerosis; Cook had been a supporter since being misdiagnosed with the disease years before. "The doctor said, 'Mr. Cook, you've either had a stroke, or you have MS,' " Cook told the Auburn alumni magazine. He didn't have either. His symptoms had been produced from "lugging a lot of incredibly heavy luggage around.""

Rereading the letter with this knowledge, I don't really think it needs to be changed. I think someone that previously gone through a health scare with an undiagnosed condition is more likely to be sympathetic to the ME community. I could potentially include a sentence in the last paragraph about how Mr. Cook knows what it's like to have a health scare with no final diagnosis, but I'm not sure that's the best approach. Based off being told that he has MS and that he has experienced vague symptoms with no resolution, there is a good chance that he is already at least aware of ME/CFS/SEID.

 

[Debbie23]

I would think that if he's gone to such lengths to preserve the privacy of his partner then we should respect that. Others may disagree but I would find it massively inappropriate about trying to approach him if he's a very private person and doesn't want a public presence. Just my two pence worth but I think that line of enquiry ought to be ruled out totally. I have tbh and say I wouldn't want to be associated with any effort to try and contact his partner rather than him, It makes me very uncomfortable, the idea of trying to contact someone who's tried so hard to retain their privacy, just because their partner has a public image. If privacy is so important to them as a couple and him as an individual then we ought to respect that totally IMHO.

 

[redviper]

I would tend to agree, Debbie. I just thought the issue was at least worth raising.