Rare Disease Research

[WhataBreeze]

Rare Disease Research in the United States

"Cost Effective"

As a layman advocate and founder of the "CPM (Central Pontine Myelinolysis) Awareness Foundation," in regard to my own acquired iatrogenic toxic demyelinating neuromuscular disease of the central nervous system, I truly believe the two words above could be magical. Come this February 2008, I will become a six year survivor of this said to be considerably not as rare as led to believe. I have researched CPM for almost five years. After my personal communication with many all over the world, it is worth a few extra minutes to use your favorite search engine to combine the title name of your disease/disorder along with cost effective and start reading those links.

Pssssst... In four years now, Myelinolysis on Google has gone from 1,500 links to 109,000. Late next year the "Landscape will be changing for CPM as it will finally be on the map and highly recognizeable." Good to be back, G-d Bless...


Franky and Breeze

[Buttons2]

HUGS to you Breeze,and belly tickles to Franky!! Good work by the way! How's your mother? Is she coming for Thanksgiving this year?

You are not only a survivor-you are a wonderful man & a tremendous advocate!

Many more years to look forward to your posts!
Buttons

[WhataBreeze]

Good Morning BT Community and Internet Viewers

And to you Buttons, "What can I say," to continue to live up to those laurels in your greeting. There is sooooooooooo much to say in regard to my time "Let's just say on hiatus from B/T," that the ole' statement "There is a reason for everything," is so very true.

The last six months have been both very rewarding in regard to the major headway I've made with CPM Awareness along with unbelievable expectations that truly surpassed any of my dreams for where "We the CPM victims by pulling together years ago have made enough of an impact that I now have important researchers and clinicians working side by side to uncover the 50 year old bolted on lid to this issue of Central Pontine Myelinolysis.

I wish I was at liberty to be able to exbound on certain finds but it won't be long before my dream from almost 5 years ago will be in fact a reality when I said "CPM will shine like a Lighthouse so no more of us have to secumb to iatrogenic causes that have such a baring on so many lives. After all these years, the issue of "Cost Effectiveness," became the screen for those who had any involvement from a medical standpoint. My personal quirk is to call it the "Witness Protection Plan."

It's a bit hard to believe that money again has such power as to control life that much easier than even medicine. I predict within the next year or two, this entire episode of 50 years will open plenty of room in the Neurological Arcchives. One extremely important point I wish to make, is that those in the "World of Neurology," need to be applauded. The fact is from this layman advocate CPM survivors perspective is that this horrible unjustified cover-up was shamefully dropped in the neurologists, radiologists, nephrologists and pathologists laps, "After the fact."

I can only pray that my story, which is not yet complete will give the incentive to others who similar to me begin to reseach their own issues but hopefully make great progress even if the benefit is within just by chance as I have seen will make a world wide difference starting right here in B/T as I did. Look forward to share upcoming events when I can. G-d Bless...


Franky & Breeze

[Cry Tears]

Hey....you've been sorely missed!
And I'm sooo glad to see "Franky"....how is he?
Any more problems with the tumours? Treatments etc?
And you...glad to hear things are statis quo...perhaps a little better?
Hugs, cheryl

[WhataBreeze]

No Crytears, you, buttons, my long time regular viewers, the entire B/T Community as well as all the Internet viewers who continue to fllow BrainTalk were deeply mssed also. As everyone knows, "There is a reason for everything."

There has been so much that has transpired in my "One Person" world directive in regard to my newly created CPM (Central Pontine Myelinolysis) Awareness Foundation. I'm sure you all remember the issue I posted about in regard to the baby boy who also acquired CPM at a local hospital and spent an entire year being sent to four different hospitals. I'll probably do the entire story soon but rest assure between my foundation, Ronald McDonald House, Angel Flight, NIH/Office of Rare Diseases, Kennedy Krieger Institute for Children/Johns Hopkins, Dr. John W. McDonald, MD, PhD and Staff, this baby now is on track with the directives that now give him the chance to be the best he can be. I will add this "Angel Baby," to my list of God Children.

The most exciting event I was asked to assist with is the first "World CPM Meeting for Researchers, Clinicians and believe it or not actual CPM Victims and Family. This project is on a time line for the latter part of 2008. Yes, it is very exciting what one person truly can do. It all sounds like a dream but NO this is REALITY!

I will admit my own health has taken a few hits but I must act accordingly. Before I go, My Franky is the GREATEST. It was quite amusing recently as in he news which I seem to watch a lot, a man actually married his dog. I can't remember exactly where it happened but I think it had something to do with some evil doings so to say by this man. Let's put it this way, it happened on the other side of the ocean.

OK, I must have my breakfast as naturally Franky had his and currently napping in bed. Hard to believe my everything will be four years old this January 9th. Last but not least, next year you will see the brand new CPM Awareness website designed for immediate usage for victims and family. Till our next postings, G-d Bless....

Franky and Breeze

[Buttons2]

Breeze,I kept forgetting to ask about the little boy,so glad to hear he has improved! Little angel indeed!

The guy that married his dog was in India,well guess we American's haven't topped that one yet!

My dog Rags had a big tumor removed this summer on his leg,I thought of Franky @ the time & what stress you went through.....

Seems you have found your new purpose in life Breeze......that lemonade is spreading around!

God bless YOU breeze,and all the other's helping to bring forth knowledge & awareness!

HUGS Buttons