What do you do in the medical field? Are you a doctor or a nurse of any
sort? There is a camp - Camp Wonder - which I was a counselor for last June
(thats how I learned of EB)

The camp is for kids with severe skin diseases and EB is one of the major
skin disease represented... others are Alopecia Areata, Icthyosis...
Psoriasis...
The kids that go by themselves that need bandage changes... they need docs
and nurses to help with that and to give out meds and stuff... I went and it
changed my life to say the least. I have Hidradenitis Suppurativa - a mild skin
disease and it taught me so much about being thankful for what I do have....
Anywho... All I did was emailed the CSDF - Childrens Skin Disease Foundation -
www.csdf.org and told them that I was interested in helping out and Christine
Tenconi replied saying that the foundation would pay my travel expenses
(airfare & shuttle) and pay for my week at camp that it wouldnt cost me anything
-
sent me an application and I was in! It was soooo cool. There were kids with
simplex and dystrophic from what I know of there were not any junctional's
there. Anyhow... Just thought I'd let you know if you are interested... The
dates for camp this year is I think June 19-25.

I understand if you cant because of your kids but if you have any kind of
sitter or someone to take care of them it would be well worth it for you...

Also, This is a great group but it is quiet as Rachelle said... You might do
well to join EBWorld if you are so inclined... they are mostly families of EB
Children but they are very nice to me and I am not a family member - just a
camp counselor who feels the same way you do... EB tugged at my heartstrings
last june and hasnt let go yet...

Love, Lexi
DismalDorkess@...


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