Greetings!
 
I am happy to share some "official" good news with you.  Please feel free to
pass it along to our other EB forums where I am not a member.  And of course,
most of you already know "our Millie" (Melissa in the video).  The
following feature on research carried out by Prof. John McGrath was shown on UK
Channel 4 News over the weekend:

http://www.channel4.com/news/articles/society/health/hope+for+skin+disease+suffe\
rers+/3097987
I attach the press release prepared by Dr. Clare Robinson, Research Manager at
the DEBRA International Medical and Scientific Advisory Panel.  You can share
this with your local media, if you like.
 
I can also pass on news that Prof. Michele De Luca
(http://www.debra.org.uk/breakthrough-in-eb-research.html), will be back in the
lab with a coming expanded clinical trial in Italy.  As well, some of my
colleagues attended the conference in Zagreb, Croatia, and tell me that Prof.
Alain Hovnanian in France intends to open a lab in Paris soon for a new clinical
trial.  All VERY good news for our EB community!
 
I am sure you may be starting to wonder what YOU can do this October, to create
EB awareness and help all of this research take place!  There will be ample
opportunity for everyone, anywhere, this year... each of us has an impact on our
world, and now is NOT the time for complacency, when gene therapies are gearing
up!  So please, THINK globally and ACT locally at the grassroots, because that
is where we connect, where we are heard.  Now more than ever, EB patients are
not alone.
 
I gave a talk last October at the DEBRA International EB conference that took
place in Belgium, and garnered the curiousity of EB advocates from around the
globe, in what we've been doing in North America.  And so, in 2009, the Walk a
Mile in My Shoes campaign expands to take place globally.  There will be an open
invitation to DEBRA partners, and EBMRF will continue as a treasured partner -
this year marks our transition from recognizing National EB Awareness Week, to
recognizing INTERNATIONAL EB AWARENESS WEEK.  The related Second Life benefit
will again be available for people who prefer to be a "virtual activist." 
 
And last but certainly NOT least, I'm working on behalf of DEBRA Canada
alongside DEBRA Italy and DEBRA of America, to host our FIRST international
awareness / fundraising event, called "Tomorrow, Think of Me"
- connected-by-satellite extravaganzas taking place at the same time in Rome,
New York City and Toronto, at incredible venues, with an international
art/jewelry auction.  We aim to have a global charity appeal during the entirety
of International EB Awareness Week, the last week of October.  I will share the
names of patrons and initial sponsors with you soon - I think you'll be pleased
with our efforts. 
 
If EVER there was a time when we need to come together as a community, as a
team, in harmony, it is this year.  Here are a few things you
can start PLANNING, to be involved:


Write to your local and state/provincial policy-makers (mayors, governors, MP's,
MPP's) and ask them to make a public proclamation of International Epidermolysis
Bullosa Awareness Week (the new and improved WAM website will have examples of
letters you can use, and effective official proclamations that have been made in
prior years);

Participate by registering to attend one of the three TTM events in Rome, NYC or
Toronto, once details are posted and a guest list is underway;

Draft a press release (you'll get the tools at the new WAM website to do so) and
ask your local media to do a story on EB;

Create a social media group or blog, and tell the world your EB story, and ask
others to participate;

Host a WAM walkathon or other fundraiser (firefighter charity drive?
dance-athon? potluck dinner? http://www.ebrelay.org/Fundraising%20Tips.pdf), and
donate your proceeds to a legitimate EB nonprofit charity where the money will
be used competently and it will make an impact; and/or

Watch the satellite broadcast when Rome/NYC/Toronto patrons and hosts are on,
October 29th, exact timeframe to be designated.
 
We need more effective treatments, more support for our EB families worldwide,
and more funding to find the cure(s) for EB.  But I don't have to tell you that
- I am preaching to the choir, as they say!  PLEASE add me as a Facebook friend
(gena brumitt gruschovnik), if you will, or follow my Twitter (libertygena), to
ensure you hear about the progress we're making with these activities! 
 
If you feel that you have some time to spare to help with the WAM campaign or
TTM planning, please email me as soon as possible.  We could surely use a few
more dedicated, energetic people, and I'd like to set up about five groups of
three people each, working on specific projects.  One thing I am working on
right now is to make arrangements with LiveStation for our live charity appeal. 
If we're successful, I expect some EB families will be asked to SKYPE in -
again, please email me if you feel you can spare some time and energy for
interviews that last week of October.  When the media come asking, we'd like to
know who to send them to!
 
Thanks so much for listening, and always know it is my sincere honor to serve
you all, in tribute to my Mom.  It is a very good way for me to celebrate her
life.
 
ON or AFTER MAY 1 (please, NOT before!), VISIT www.mywalkamile.org, our new
"Walk a Mile in My Shoes" international campaign website.  The old site will not
be updated, and will be taken down later this year.
 
Happy SPRING, and God bless!
Gena
About my Mom: http://www.ebrelay.org/inspiration.html 
 





Vice Treasurer, Executive Committee, DEBRA International -
www.debra-international.org
Director of Awareness & Education, DEBRA Canada - www.debracanada.org
CEO, Walk a Mile in My Shoes campaign for International EB Awareness Week -
www.ebrelay.org


We must be the change we wish to see in the world.  ~ Mahatma Gandhi

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