To the Board: Don't know if this is appropriate!

[Guest guest]

Hello Board Members,

 

Today I received in the mail a letter of solicitation from " The Scleroderma

Foundation " , featuring a set of 12 year old female identical twins who live

iIlliopolis, Illinois.  Their names are and a Radinsky.  The mother's

name is and the father is Mike.  They have an older sister named Deanna

who is 16.  That is all the information I could glean from the flyer. They are

newly diagnosed and apparently the only known case in the country of identical

twins with scleroderma. It says, they formed their own support group with the

backing of the Scleroderma Foundation. 

 

Using the photo of these twins to solicit funds which they will never see just

doesn't feel right to me. 

 

How wrong would it be if we could somehow let them know that an alternate

therapy exists that could give them their health and hope back of leading a

normal life.

 

I'm wondering if we have anyone in their area who could intervene.  I just feel

so bad for these twins who are being exploited.

 

The reason the Scleroderma Foundation has us on their records is because Mike

and I once worked for them and attended many meetings both supportive and

educational.  Every chance we had at these meetings we would get up and speak

out about the Infectious Theory and the Antibiotic Protocol.  The doctors

usually put down what we had to say, but later during breaks in the lobby, many

people would come up to us wanting to know more.  We got quite a few converts

like that.  We were very proactive while we lived in NYC,

 

I don't want to be the one to contact them as I think I have stirred the pot too

rigorously already with the Amy posts.

 

It would be such a shame for these girls to grow up never knowing they could be

helped.

 

Do you have any suggestions?  Awaiting your answer. Dolores & Mike

 

 

[Guest guest]

Delores, I received this letter as well...I have the flyer...I have spoken at

length with people at the SD Foundation at the top and the ABX protocol is NOT

approved or well received there...AT ALL...I have given them my info regarding

how well I did and copies of the studies on both the AP and on the protocol I

did for my lung disease...

I will say that the SD Foundation did help me in my fight to receive

photopheresis and helped with battle my insurance company for coverage for this

unapproved treatment........as far as I was told then...the ABX protocol is NOT

an accepted treatment and not one they support....I have offered to speak at SD

meetings to discuss the AP and was turned down..altho to be honest I have spoken

at several SD Foundation meetings about the photopheresis tx I received for the

lung disease.....even tho I know for a fact that a noted SD researcher on their

BOARD is rabidly against photopheresis....This particular physician is one of

the reasons that photopheresis is not an accepted tx covered by insurance for SD

lung.

Hopefully, the twins are researching...the younger generation seems to be quite

adept at researching online and will find the AP....or...the other option is

someone in their city to reach out to them and explain the protocol and direct

them to the info here and at the RoadBack site, etc...Right now, with the recent

mailing of the flyer I am sure they are being inundated with info and many

different treatment options....

Debbie in Cincinnati, Ohio

rheumatic To the Board: Don't know if this is appropriate!

Hello Board Members,

Today I received in the mail a letter of solicitation from " The Scleroderma

Foundation " , featuring a set of 12 year old female identical twins who live

iIlliopolis, Illinois. Their names are and a Radinsky. The mother's

name is and the father is Mike. They have an older sister named Deanna

who is 16. That is all the information I could glean from the flyer. They are

newly diagnosed and apparently the only known case in the country of identical

twins with scleroderma. It says, they formed their own support group with the

backing of the Scleroderma Foundation.

Using the photo of these twins to solicit funds which they will never see just

doesn't feel right to me.

How wrong would it be if we could somehow let them know that an alternate

therapy exists that could give them their health and hope back of leading a

normal life.

I'm wondering if we have anyone in their area who could intervene. I just

feel so bad for these twins who are being exploited.

The reason the Scleroderma Foundation has us on their records is because Mike

and I once worked for them and attended many meetings both supportive and

educational. Every chance we had at these meetings we would get up and speak

out about the Infectious Theory and the Antibiotic Protocol. The doctors

usually put down what we had to say, but later during breaks in the lobby, many

people would come up to us wanting to know more. We got quite a few converts

like that. We were very proactive while we lived in NYC,

I don't want to be the one to contact them as I think I have stirred the pot

too rigorously already with the Amy posts.

It would be such a shame for these girls to grow up never knowing they could

be helped.

Do you have any suggestions? Awaiting your answer. Dolores & Mike

[Guest guest]

Hi Debbie,  I certainly hope someone can get the info to them.  I remember how

we were treated like Pariah's when we spoke out about A/P.  They were down

right insulting and demeaning.  A lot of people saw thru the docs and saw how

inbedded they were with the drug companies especially Actelion. They would seek

Mike and I out after the meetings and ply us for more information about A/P,

which is the main reason we were at the meetings to start with. They have a lot

of people on their payroll and therefore, they need to continue soliciting, but

the money is not going to help anyone with Scleroderma or research.  It is

going into the pockets of the big wigs who get paid to get up and speak.  And

the rest of the money goes to Big Pharm. 

 

Who suffers are these kids like the 12 yr. old twins who are being exploited. 

They are adorable children with a deadly disease and it hurts to see SDF using

their photo for solicitation.  I hope somebody in their vicinity or someone

on-line can reach them thru facebook or twitter and help them.  Dolores 

From: DEBBIE GIBSON <Debbullwinkle@...>

Subject: Re: rheumatic To the Board: Don't know if this is appropriate!

rheumatic

Date: Wednesday, June 23, 2010, 6:37 PM

 

Delores, I received this letter as well...I have the flyer...I have spoken at

length with people at the SD Foundation at the top and the ABX protocol is NOT

approved or well received there...AT ALL...I have given them my info regarding

how well I did and copies of the studies on both the AP and on the protocol I

did for my lung disease...

I will say that the SD Foundation did help me in my fight to receive

photopheresis and helped with battle my insurance company for coverage for this

unapproved treatment........as far as I was told then...the ABX protocol is NOT

an accepted treatment and not one they support....I have offered to speak at SD

meetings to discuss the AP and was turned down..altho to be honest I have spoken

at several SD Foundation meetings about the photopheresis tx I received for the

lung disease.....even tho I know for a fact that a noted SD researcher on their

BOARD is rabidly against photopheresis....This particular physician is one of

the reasons that photopheresis is not an accepted tx covered by insurance for SD

lung.

Hopefully, the twins are researching...the younger generation seems to be quite

adept at researching online and will find the AP....or...the other option is

someone in their city to reach out to them and explain the protocol and direct

them to the info here and at the RoadBack site, etc...Right now, with the recent

mailing of the flyer I am sure they are being inundated with info and many

different treatment options....

Debbie in Cincinnati, Ohio

rheumatic To the Board: Don't know if this is appropriate!

Hello Board Members,

Today I received in the mail a letter of solicitation from " The Scleroderma

Foundation " , featuring a set of 12 year old female identical twins who live

iIlliopolis, Illinois. Their names are and a Radinsky. The mother's

name is and the father is Mike. They have an older sister named Deanna who

is 16. That is all the information I could glean from the flyer. They are newly

diagnosed and apparently the only known case in the country of identical twins

with scleroderma. It says, they formed their own support group with the backing

of the Scleroderma Foundation.

Using the photo of these twins to solicit funds which they will never see just

doesn't feel right to me.

How wrong would it be if we could somehow let them know that an alternate

therapy exists that could give them their health and hope back of leading a

normal life.

I'm wondering if we have anyone in their area who could intervene. I just feel

so bad for these twins who are being exploited.

The reason the Scleroderma Foundation has us on their records is because Mike

and I once worked for them and attended many meetings both supportive and

educational. Every chance we had at these meetings we would get up and speak out

about the Infectious Theory and the Antibiotic Protocol. The doctors usually put

down what we had to say, but later during breaks in the lobby, many people would

come up to us wanting to know more. We got quite a few converts like that. We

were very proactive while we lived in NYC,

I don't want to be the one to contact them as I think I have stirred the pot too

rigorously already with the Amy posts.

It would be such a shame for these girls to grow up never knowing they could be

helped.

Do you have any suggestions? Awaiting your answer. Dolores & Mike