Tuesday, July 8, 2014
MP Moves to a New Level
I have been called a hero by many people. I am doing nothing more than anyone else in the early to mid stage of this disease can do.
I simply am talking about it more. Most don''t talk about it, or can't. What I do, everything that has happened has been on account of the members we have.
I seen a need for a place where people could come to on the internet, get real time answers to their questions and be supported by one another.
If you can believe it, in the beginning I was told by many people you can't have patients, family members, caregivers and advocates on the same site.
I of course said, "Why? How could you not?" Just because no one at the time did it, doesn't mean it can't be done, and surly doesn't mean it shouldn't be done.
The rest is all because of the members. I have said since the beginning this isn't about Rick Phelps. It's about what we do on Mp for one another.
Everything I have done for the last five years has lead to where we are today. The site here, the book, the song, the speaking engagements and much, much more.
And now we are taking it to a new level. Because the need is there, and no one else is doing what we can do, or the approach we do it in.
We will be having support groups all across the nation springing up. Doing just what we do on Mp, something other organizations do little of...
We talk about the disease. We defy denial. We don't skirt around the hard questions. And we don't sugar coat anything.
What you get on Mp is the truth. Not talk about the latest concoction to come down the pike, or the cure that is coming some day.
Everyone needs Hope. But when you tell someone a cure is coming and you allow them to believe it could happen in their life time, that is not being honest. That is false hope.
It's also a form of denial. A cure is coming. But when? No one knows. I do know they are no closer now then they were five years ago when I was diagnosed.
I also know that if a cure was found today, it would not help me. The FDA would have it tied up for decades before it was released to the general public.
I also know if coconut oil, fish oil, and all these other concoctions did what many claim they do, no one would be abel to afford them.
If coconut oil was this wonder drug, it would run you about $10,000 a jar. We all know this, but you won't hear anyone speak of it.
We are at an impasse of sorts on account of our Gov't not allocating enough funding. All the walks to end Alzheimers in the world will not cure this disease.
In my opinion the walks do one thing, and one thing only, they go to administration fees. They go to payroll for the Alzheimer Association.
Did you know that the President of the Alzheimer Association makes $996,000 a year. With a retirement of $393,000 a year? They are ninth on the highest paid positions for charitable organizations that are listed.
Now, who of you think that any one person is worth that kind of money? This is what you won't hear about some of these organizations.
So the next time you give to the Alzheimer Association have some fun, ask them where the money goes. I did. And was immediately shut down.
I tell you, there is nothing wrong with donating to any organization, but when the powers to be of that organization are making astronomical amounts of money, you have to ask yourself where does my money go?
There is not one thing wrong with supporting any organization you believe in. We are now a non profit organization and will indeed be accepting support also.
You will never see us ask for donations here on Mp. We know all to well that most of our members live payday to payday.
They have trouble paying for their medications sometimes let alone being hounded for monies here. We haven't allowed that here and we ourselves won't be doing that either.
We will have a link in time to a page that we will post for those of you who can and want to support what we do here.
We are concentrating on most of our support coming from foundations and grants. We do want those of you to know that we are a non profit now and will have a place where you make a donations soon if anyone choose to do so.
But we will once again be running our on site support groups just. as we run this site here. Responsibly. Not many organizations can tell you that. Not many at all...