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mymsviews.com
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mymsviews.org
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| Elaine Delack Letters and my opinions...This is from the Procarin Message Board <Procarin Patch Users/New MS Treatment> Elaine Delack invited the MS Society to an educational meeting and the MS Society ignored her invitation. The first letter invite is her invitation, the second is her follow-up letter no show after they didn't show. Elaine is being very diplomatic... (After the 3 years (René Part 1) of screaming I did to get mitoxantrone, which they're now doing studies at UCSF!), I'd say Elaine is very, very diplomatic!! The MS Society (meaning drug companies and investors) are running around in their back rooms discussing how the Hell they're going to stop this snowball! If they would have responded "intelligently", (Is that possible??) which would have been to treat Elaine Delack and other MSers as if we actually have brains instead of ignoring this hole Procarin matter, they would have been better off. Now they' all be losing donations and I don't think in small numbers! I've told Family, friends and strangers for years that if they're going to donate, donate to the local Chapters. (the National Chapter has NEVER helped me) Now I think people aware of Procarin will start donating to EDMS and the MS Committee Chapters (I hope!) The Local Chapters and the Multiple Sclerosis Association of America (MSAA) help MSers if they need assistance. Local Chapters help with paying bills, building ramps, taking MSers to a Concert, Camp, whatever. The MSAA help with wheelchairs, housing projects, bigger stuff! But... by donations going to National Chapters things needed aren't acquired. The National Chapters do squat! (My experience only all though I'm not alone!) Now with them ignoring Procarin (no surprise) Lots of MSers are having their eyes opened. The movie Lorenzo's Oil shows a typical Society that tried blowing Augusto and Michaela Odone (parents/inventors) off... can you imagine if the Odone's had access to the Internet than! Their website The Myelin Project mentions MS and other diseases that Lorenzo's Oil might help or other treatments that they're working on that might help. I talked with Augusto several years ago, he's very (at that time) accessible. He/they can't give Lorenzo's Oil to me (nor can I get a prescription) but if I acquired some, they could give suggestions. (Black Market anyone...Believe me I tried!!) Odone... Delack...... who's next!!... smile
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