Wow, that's really *gulp* thrilling, the idea of skydiving to raise funds
and awareness for EB! As for me, I have always been scared of heights, so I
wouldn't be joining you. However, it's a GREAT idea.

Have you heard of EBAN yet? Epidermolysis Bullosa Action Network? We will
be looking for great fundraising ideas in the not-too-distant future. I
will include our Press Release here for your consideration. We are not
asking for donations at this time, just endorsement. We've made application
very recently for our tax-exempt nonprofit status, but are happy to find we
have lots of support out there in the EB community. Perhaps you might
consider joining EBAN in its goals, whether you choose to fundraise for
another org or not. At any rate, here is the Release...

Marybeth Sheridan, Silvia Corradin and Gena Gruschovnik are delighted to
announce the birth of a vital new organization, the Epidermolysis Bullosa
Action Network ("EBAN").

Please view the attached MS Word document or visit
http://www.ebanusa.org/pressrelease.htm to read the entire press release
publicizing the new revolution in EB advocacy. (There is a guestmap and
guestbook, so please be sure to let us know you dropped by!)

We would be greatly obliged to receive your endorsement!

All the best,
Gena


-----Original Message-----
From: butterflychildren@yahoogroups.com
[mailto:butterflychildren@yahoogroups.com]
Sent: Thursday, April 28, 2005 11:30 AM
To: butterflychildren@yahoogroups.com
Subject: [Butterfly Children] Digest Number 524



There is 1 message in this issue.

Topics in this digest:

1. Active Members who wish to take control of this group
From: hon_w.rm


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________________________________________________________________________

Message: 1
Date: Wed, 27 Apr 2005 22:02:15 -0000
From: hon_w.rm
Subject: Active Members who wish to take control of this group


Hi everyone,

Sorry it's litteraly been years since I last post anything on this
group, there's no excuse really I just been a lazy sod!

Anyway I would appreciate it if anyone of the active members who
would like to take control of this group to benefit other's and
themselves with advice and treatments for EB as I don't regularly
check groups anymore. So if you would like to become a moderator,
please email me and I can change the settings to allow you to take
control of this group.

My first aim when I started this group with my friend Colin, was to
raise awareness and to give parents, sufferers and anyone else
insterested, a place where they can discuss their experiences, their
treatments methods what works for them and what doesn't, ways to
improve life and overcome it's burdens.

I just seen the pictures posted by the Lutter's and it brought back
memories when I visited Trevor back in 2000 with my friend Connie.
The years has flown past, and when I look back I don't know where it
has gone!

I'm happy that Trevor is doing well, I knew his a fighther all along
since I first saw him blowing raspberries at me and Connie lol.

I have been using new dressings lately which seems to improve the
wound management to some degree, I don't know if you have tried these
but it's worth a try to see how your sons/daughters or yourself with
EB take to it:-

Meplilex Transfer (its a thin dressing that has a soft sponge feel
and lightleys sticks to the skin but not so that it hurts when u take
it off!) It comes it different sizes and its rather expensive but
it's worth it as it can stay on for a number of days depending on how
much the wounds exudes. If you have it on a number of days it's best
to soak it off when you want to replace it.

Another dressings Im trying out now is one called:-

ActiveformCool (the soothing hydrogel wound dressing) its part made
of water and it's a gel type dressing, if you have wounds that are
hot, because it's imflamed etc, you can leave this dressing in the
fridge and then apply to the wound, and it will stay cool for a while
thus cooling the affected area.

That's all for now.

P.S Anyone like to sponsor me to do my skydiving challange in order
to fundraise for DEBRA? yes.. I'm mad and it will hurt! lol





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________________
Butterfly Children Yahoo Group Home Page -
http://groups.yahoo.com/group/butterflychildren
Email the group - butterflychildren@yahoogroups.com
Email the moderators - butterflychildren-owner@yahoogroups.com
EB websites: http://www.debra.org.uk - http://www.debra.org



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