Hello, Everyone - I apologize - I have not been on the boards much
lately due to the new job (instead of provincial property, I am now
managing a golf course, and it's *quite* a learning curve being that I
am a non-golfer), but just had to make sure you all had heard the
following news... You know we've been working very hard to promote
National EB Awareness Week legislation (just go to http://thomas.loc.gov
<http://thomas.loc.gov/> and search for "epidermolysis" in the search
box to see the status of these Bills anytime). Well, in each state
there is also a state House and Senate. In the state of Delaware,
legislation entitled "HR57" was sponsored by State Congressman Outten,
and YAY!!! It passed on Wednesday, so there is now an official (in
2006) EB Awareness Week in the state of Delaware! You can see the text
of the Bill here:
http://www.legis.state.de.us/LIS/lis143.nsf/vwLegislation/HR+57/$file/30\
41430016.doc?open
<http://www.legis.state.de.us/LIS/lis143.nsf/vwLegislation/HR+57/$file/3\
041430016.doc?open> ...and more details here (it was passed by voice
vote):
http://www.legis.state.de.us/LIS/LIS143.NSF/93487d394bc01014882569a4007a\
4cb7/d9cdc79eff9a6592852571330060fdeb?OpenDocument
<http://www.legis.state.de.us/LIS/LIS143.NSF/93487d394bc01014882569a4007\
a4cb7/d9cdc79eff9a6592852571330060fdeb?OpenDocument> Last but
certainly NOT least, after Congressman Bishop's recent speech to
Congress about "our Bill" and thanks to the many letters and emails our
volunteers have been sending... Don Peshkur, grandfather of Grace
Peshkur and backbone behind National Bills HRES335 and SRES180, had this
to say in an email to me yesterday: Gena - Congratulations to all. That
[Delaware] is certainly a big win for EB... I spoke briefly with
Congressman Bishop this morning. He feels confident he will move HRES
335 when they resume next session. He asked that everyone keep up the
mailing campaign, it does help. Best to all, especially: Allyson,
Denise, Robin, Shirley and Barbara, Your efforts do not go unnoticed.
Don So it sounds like we will have cause for a BIG celebration before
long *fingers crossed*... PLEASE keep it up - keep calling and emailing
and writing to your legislators! If you have ANY questions about what
to do or how to do it, please see the files attached herein, or email me
personally at otm@... <mailto:otm@...> and I will FIND
time to help. Hugs, Gena P.S. The Delaware state motto is: "It is
good being first" - I guess so!!!!! If anyone knows who promoted EB
week to Delaware state Rep. Outten (Ortec? Craig Wood?), please let me
know!


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