All of us at some time or another have wished for a genie.  Rub the magic lamp and get three wishes.  How easy would that be!  Sadly enough, this doesn’t happen.  Why is that? Could it be because we no longer believe in magic?  What if we could borrow the magic lamp for even just a little while?

Genie in A BottleThe fact is YOU have a genie waiting to come out of YOUR magic lamp to grant wishes and do great things for your ectodermal dysplasias community and the NFED.  You can make a significant contribution.

We need your knowledge, dedication, passion, compassion, ideas, and your desire to make a difference in the lives of those affected by ectodermal dysplasias.

We are asking you to take action now:

  • Sign up to volunteer.
  • Hold fundraisers – small, medium, large to extra-large.
  • Tell your story about living with ectodermal dysplasias. Boast about your accomplishments or share your hardships as well as your children’s.
  • Create awareness in your community by hosting events and through local media.
  • Help with our advocacy efforts at the local, state and national levels.

You are the life-line of the NFED and the entire ectodermal dysplasias community.

Volunteers VIIHow can WE get to where WE want to be? It’s not only the NFED staff members’, your Board of Directors’, your Scientific Advisory, Patient Care, and Family Support Councils and your Liaisons’ responsibility but all of YOU and US and THEM together as a Team  who can safeguard the future of the NFED’s mission.  You have the fortitude to meet our challenges and accomplish our goals.

We all have a genie deep down inside, but most of us don’t realize that we can unleash its magic power.


Contact Lea Richardson at 618-566-6871  or Seth Ferris at  to discuss volunteer and/or fundraising opportunities.

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