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Maybe
you have ichthyosis yourself. Or you care about someone who
does. Maybe you didn't know anything at all about it until you
came to this site. Regardless, people with ichthyosis need
your help.
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What can
you do?
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Raise
Awareness |
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Tell
someone you know about ichthyosis. Explain what it is, how it
affects someone, what a person who has ichthyosis might look like.
Educate the world, one person at a time. It could be a congressman,
a teacher, your next door neighboor, or one of your friends. That
one person may have the opportunity to be kinder if they meet someone
affected by ichthyosis. Or they may have ideas or resources that
could lead to better treatments or cures. Knowledge is
power. You have the power to make the world better for people with
ichthyosis by sharing your knowledge.
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Support
F.I.R.S.T. |
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The
Foundation for Ichthyosis and Related Skin Types, F.I.R.S.T.,
is the only national, non-profit organization dedicated to helping
families with the genetic skin diseases collectively called the ichthyoses.
F.I.R.S.T. provides
support,information, education and advocacy for individuals and families
affected by ichthyosis. F.I.R.S.T.
supports research into causes, treatments and a cure for ichthyosis.
(Please note:
One of the goals of
Ichthyosis Information
is to generate support and awareness
for F.I.R.S.T.
However, Ichthyosis
Information is
a personal webpage. Except where specifically attributed to
F.I.R.S.T.,
the content of Ichthyosis
Information is
not the opinion, policy, or standard of
F.I.R.S.T.)
The
work that F.I.R.S.T.
does,
and the support it provides to families with ichthyosis, profoundly
impacts the ichthyosis community. As you might imagine, F.I.R.S.T.
is under-staffed and under-funded. You can help F.I.R.S.T.
in any number of ways.
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 | Donate your services |
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Chances
are, if you can spare some time, you can do something that would
help F.I.R.S.T.
Are you a good writer? You could write letters to
congressional representatives, prepare articles for FOCUS
(the quarterly newsletter of F.I.R.S.T.),
assist with other correspondence. Maybe you have
professional skills that would help F.I.R.S.T.--most
of the Foundation's legal, investment, and accounting counsel is
donated by caring professionals. Are you good at organizing
fundraisers? Whether the time you donate is large or
small, involves special skills or not, you can help F.I.R.S.T.
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| Designate your United Way
contributions to F.I.R.S.T. |
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Many
people are encouraged by their employer to contribute to United
Way. Did you know you can tell United Way where you want
your money spent? You can even designate your donation
(all of it or just some part) to specific agencies. Please
consider designating your United Way contributions to F.I.R.S.T.
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Federal
employees donate to the CFC fund. Similar to United Way,
these donations go into a general fund if they are not designated
for a specific, CFC-eligible organization. F.I.R.S.T.
is a CFC-eligible organization! You can designate your CFC
contribution to F.I.R.S.T.!
Contact F.I.R.S.T.
for their CFC number.
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| Fund raise |
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Can you contribute money directly
to F.I.R.S.T.
yourself? No contribution is too small -- or too big!
Can you help organize a fund raiser? Do you know of
organizations, foundations, corporations, or affluent individuals
in your area that might be willing to support F.I.R.S.T.?
People give money to worthy causes
because they want to--not because they felt pressured into giving.
Simply state your case: describe the problem, explain
that an organization like F.I.R.S.T.
is working to solve the problem, and suggest that they can be part
of the solution by helping F.I.R.S.T.
You never know until you ask.
If you're shy about asking for
donations, that's okay--let F.I.R.S.T.
know who to contact at your company, foundation, or other
organization, and a member of the Board of Directors will do the
asking!
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The
National Registry for Ichthyosis and Related Disorders is
supported by the National Institutes for Health. The success
of the registry is critical for everyone affected by ichthyosis.
If you, or someone you care about, has ichthyosis, please find out
more about the registry and consider enrolling.
F.I.R.S.T.
has put
together some wonderful educational materials on ichthyosis. Contact
their offices for information on how to obtain them.
They
have an excerpt
of a wonderful video available on their website. I love
this video!
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Ichthyosis
Awareness Week |
Every
year in the fall, one week is designated Ichthyosis Awareness
Week. This is a great time to focus your activities for
raising awareness, or to make that commitment to yourself to explain
ichthyosis to just one person.
Look
for more information on our bulletin board.
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