Hello, my Friends!

I have WONDERFUL news to share with you today!

On Thursday, September 21, in the Senate of the United States of
America, S.RES.180, the Senate Resolution to promote "National
Epidermolysis Bullosa Awareness Week," was approved!!! The Committee on
Health, Education, Labor and Pensions, has discharged this Bill, and
Congressional approval is pending.

Senator Schumer initiated this Bill, and he was joined by the following
Senators in sponsorship:

Clinton; Kerry; Feinstein; Johnson, Corzine; Cochran; Dorgan; Reid;
Coleman; Warner; Kohl; Hatch; Bennett and Feingold. If any of these is
YOUR Senator, I think a letter of appreciation might be in order.

The following is described in "How Our Laws Are Made" as the next step,
which I hope will all take place quickly:

When the Senate passes a bill that originated in the Senate, it is sent
to the House for consideration unless it is held by unanimous consent to
become a vehicle for a similar House bill if and when passed by the
House. The Senate bill is referred to the appropriate House committee
for consideration or held at the Speaker's table at the Speaker's
discretion for possible amendment following action on a companion House
bill. If the committee reports the bill to the full House and if the
bill is passed by the House without amendment, it is ready for
enrollment.

Thursday was a BIG day in the Senate - 133 Actions took place! They
discussed the Sudan, HIV/AIDS, Homeland Security, abortion, and we are
#91 on the agenda:

91. S.RES.180: A resolution supporting the goals and ideals of a
National Epidermolysis Bullosa Awareness Week to raise public awareness
and understanding of the disease and to foster understanding of the
impact of the disease on patients and their families.

Sponsor: Sen Schumer, Charles E. [NY] (introduced 6/23/2005) Cosponsors
(14)

Committees: Senate Health, Education, Labor, and Pensions
Latest Major Action: 9/21/2006 Passed/agreed to in Senate. Status:
Resolution agreed to in Senate without amendment and with a preamble by
Unanimous Consent.

I spoke to Suzanne Cohen today, and she said that Don Peshkur is
speaking to Congressman Bishop today to ensure we do everything we can
to get this passed quickly. If there is something we can do to help,
they will let me know and I'll pass it on! She said that Don again
expressed his thanks to those volunteers who worked with me on our
"communication project" earlier this year, and to the EB community as a
whole, for all of the letters you wrote and phone calls you made to your
legislators - he really thinks we made a big difference!

As DebRA of America states on their website as of today - "This
represents an important step on the road to greater support in
Washington for EB research."

So, THANK YOU EVERYONE!!! From the bottom of my heart! It won't hurt to
call or write to your Congressman if you haven't gotten to it yet! Now
is DEFINITELY the time!

Hugs, Gena



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