MRF April Newsletter - Letter to Obama

[Katinka]

xxxxx

xxxxxx



Yxxxxxxxxxxxxxxxxx

[carla]

I'm saying Nowt

[meg280]

This is just a thought:
Since there has to be a larger group who financially benefit from the money we spend daily to treat Morgs. w/o it being real, that will do everything in their power to keep awareness and a legit title away from the Morgs. disease, bc the longer it is not given credit the more money they make, then when it does become legit (bc it is too wide spread), they will need to figure out a way to bank off of the treatments known to work, get patents, ect. Since all this takes time, making sure they get the $ from adding: taxes, surcharges, fees for testing, fees for approving, ect

Do you think anyone that has kept this on the DL will allow him to spend any time researching this w/o a large group of big name or very $$$ ppl pushing the issue and making it as much of a focus point like Cancer or AIDS? Especially if there are ppl who have invested so much time saying it doesn't exist bc the cash flow could come crashing down around them, the gov't the health care system... If ppl want to get this disease noticed they need to tap into multiple contacts that can take the time and have the $ to spend along with the desire of being the constant squeaky wheel, again multiple ppl doing this, and feeding the media, so that the media will go along for the ride. Everything in the medical world takes years and years before enough ppl have been affected by a disease that can no longer stay in a denial zone. Fybermialga (sp) my cousin has suffered from this for years, was on her way to being a ballerina in major theatres when it took her dream away and she still fights it everyday. The insurance company is always a huge battle, care for her at home, and any assistance to go to Dr.'s apts. bc she doesn't have the streangth or brain function to get there alone, all costs that come outa pocket that the insurance company will never cover. With it just being recognized as a real disease last year.... a little too late since she will be heading into her 60's with 30 years of a life cut short and can never get back. 30 years she has suffered and they just officialy state that it is a real disease.... no cure for what another 30 or longer years.... Can we afford to wait that long? Especially with our babies getting sick so young... Super scarry.

Sorry for the rant, not directed at the thread just in general frustration that we are all pawns that get stuck in a maze....

[Katinka]

xxxxxxxxxxxxxxxxxxx

[Sadsack]

I know I'll write the letter - can't see a down side to trying.
SS

[meg280]

Didn't mean to come across negative, sorry Katinka. Def. think any suggestion or new find in reaching out is fabulous. Thats what I tried to state at the end of the post, it just got lost in my crabbines. I think I got wrapped up in the frustration, anything is def. worth trying.
Restated in a positive manner: tapping into this type of outreach, we need to start reaching out to the big guns who can have a face to face in these types of circles... Those who have the energy and backing to keep it in big neon lights, not allowing the health dep. off the hook for a diagnosis...

Wish the 6 degrees of seperation included phone numbers and emails....


Xoxo 4give me,
Meg

[Jo]

Thanks Katinka for the MRF letter.

You should copy in Horst Köhler and us Gordon Brown.

Lets get noisy

Jo xxx

[Katinka]

xxxxxxxxxxxxxxxxxxxx

[kmar]

FYI:

The new board member at MRF is Louise Mandrell (the singer) who has raised lots of money for cancer and other charity causes.

Way back a friend of mine who sang back up in Nashville for both The Mandrell sisters and Dolly Parton died of cancer. She did tell me that the Mandrell's were very good people.


Biography - Louise Mandrell - Official Website

From her site...
"She spent countless hours of her own time lending her name, talents and resources to a wide range of charitable causes, including the United Way and the American Cancer Society. Louise also has been a longtime champion of Boy Scouts of America, and for seven years, her Louise Mandrell Celebrity Shoot television specials raised more than $1 million for the program."

[kmar]

Originally Posted by Jo

Thanks Katinka for the MRF letter.

You should copy in Horst Köhler and us Gordon Brown.

Lets get noisy

Jo xxx

I'll be sending my letter too!

Seems like more money is spent caring for the ill and disability payments when healing people would be more profitable for a country.

Yes, I believe Pres. Obama will not let the letters sit around if there are masses of them.

He was one of the Senators that helped get the CDC to study this disease.

If he burried in letters about Morgellons (especially----if they are received WORLDWIDE thanks Katinka) ... well morgellons simply can't be ignored or taken lightly.