Hi all,
This is a coppy and paste of an e-mail that I had written to my list @
www.onelist.com. Excuse me for the intrussion on your list but we have
comonalities, we are all geneticaly disabled. A link to my list is below,
please take time to read and concider this:
______________________________________________________________________
I wrote an e-mail to Jeb Bush, Gov. of Florida and son of former president
Bush and brother of presidential canidat George Bush, and asked him for a
meeting to discuss a new accomplishment for his office. You see, since his
father's name is on the ADA this would be a great political advancement and
achievement for him politically. His personal secratary e-mailed me today
asking me for my street address, not much of a brighter side but success
somewhere. You also need to realize, if I can meet with Jeb Bush, I preffer
my place or Orlando, news media will want to know why. That's coverage I can
count on, unless they asked for my address to lock me up as a looney:) I
require serious assistance now. I am copying and pasting a note to this
e-mail, I began circulating it to other lists and AOL msg boards, please
everyone do the same to as many disabled communtities, lists, msg boards as
you can.
Hi all,
My name is Russ and I have Friedreich's Ataxia (another form of MD but
rare, if you heard of it I'd be surprised). I am 30 and use a wheelchair. I
have little or no speed, balance, coordination or reflexes. As a result,
this is a nuero muscular disease so every thing is affected except my brain,
so they say. I hate to intrude in a list if/and where I do not belong but, I
hope to do some reasoning. First of all you all must know that I not only
learned to deal and accept my preasant and future state (FDRA is
progressive), I also learned to master it. As of now I'd like to do what I
can as I can for all genetic and/or hereditary neuro and/or muscular
conditions. Just to let you all know, there is many more of these conditions
than MDA covers under their unberella. FDRA is covered by MDA but no animal
reseach is done for FDRA in the US and none in the world for other forms of
ataxia(which MDA does not support), and less for others than anyone cares to
admit. I'd like to create a dystrophy of not just for DMD, SMS, CMT, MS or
FDRA or other forms of ataxia, but all MD's and gentic disabilities. If you
might be intrested in helping me to organize a national non profit
organization in the US, join my list as a spokesperson. Actually I did this;
I created a list and organized us ataxians, of all forms, and unified us. We
gave each other titles, we have discussions and a web page too. I am the CEO
of AIA(Ataxics Inform Ataxics), then I created another list for board members
or rather spokespersons of each disabled community. I plead with anyone and
you, do the same and/or direct and show me other groups to involve, it can
only be done together as a majority group. Below is links, please visit them
and e-mail me at [log in to unmask]
Russ White
Orlando, FL
<A HREF="http://www.onelist.com/group/GeneticDisabilitiesUnite">ONElist :
GeneticDisabilitiesUnite</A>
<A HREF="http://members.aol.com/rwtw128/mypage.html">My Autobiography</A>
"Do not suppose that, if you find something hard to achieve, it is beyond
human capacity; rather, if something is possible and appropriate for man,
assume that it must also be within your own reach." - Marcus Aurelius, _The
Meditations_
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