Last updated January 1, 2013
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How You Can Help

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.

What can you do?Picture of an angel statue

Raise Awareness

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 neighbor, 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.

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.

Support F.I.R.S.T.

FIRST's logoThe 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 this website, 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.  You can help F.I.R.S.T. in any number of ways.

:: Educational Materials
F.I.R.S.T. has a wealth of educational materials that you can use.  I love this awareness card that you can print.

Contact F.I.R.S.T. for information on what all they have available and how to obtain the materials.

  • Donate your services

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.

  • Designate Your United Way Contributions to F.I.R.S.T.

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.

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.!  The Foundation's CFC code is 0810, which is listed in the charitable organizations directory.

  • Fundraise!

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!