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Fw: EB Research & Awareness - an update

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  • Gena
    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. 
    Message 1 of 1 , Apr 20, 2009
      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+sufferers+/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%c2%a0
       





      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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