95832, California

Gena <otm@...> wrote: Hi, everyone - Many of you will have
received an email from me, but
for those who did not... Would you be so kind as to email me at
otm@... <mailto:otm@...> and let me know your zip code,
and the state you live in? I'm going to put the info on a
spreadsheet... and here's why... Now that the Senate Resolution
S.RES180 for National EB Awareness Week has passed unanimously in the
Senate, I have it on good authority that we have a decent chance of
getting the House Bill H.RES.335 to a vote during the "lame-duck
session" in November. We have an even better chance if we can get 15
more co-sponsors. We have about a month to do this! A woman who
volunteered to write letters earlier this year with the group I put
together, Barbara Stowe, lives near D.C. She is willing to hand-deliver
your letter to your congressperson (essentially acting as your
representative for a face-to-face), and also tell them about her
grandson who has EB, give them some informational resources, and
hopefully get their sponsorship on the Bill. I talked to her today, and
she's excited to help. She's well-spoken, and she was a lobbyist "back
in the day." I'm going to track this, to ensure that we have as good a
chance as possible. So, once I know your zip code I will
cross-reference it with our list of co-sponsors, and if your
congressperson has not yet co-sponsored, we'll put them on the list for
a face-to-face with Barbara. I will also ask you to write an email to
your congressperson that you will send to Barbara, explaining how EB has
impacted your family. Nothing long, just talking about EB's impact, and
asking them to co-sponsor H.RES.335. I can even give you a basic letter
to use for reference. Then, we'll follow up with them to ensure we get
a "yes" or "no" answer. Barbara can call them locally, speak to the
Legislative Aide on Health for that congressperson, and bug them, in a
nice way! I will also give you the local office address and phone #s
for your congressperson, and you can contact them (if you haven't
already) for added oomph! You can let me know how that is going, and I
can track that, too. So, please let me know if you can help us with
this! Thanks so much! Gena

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