We can never thank our volunteers enough and can’t possibly repay them, but this is a start.

Our volunteers are worth their weight in gold. They share their time and talents without any compensation from the National Foundation for Ectodermal Dysplasias (NFED). The compassion, respect, and kindness they show to those affected by ectodermal dysplasias inspire all of us.

You are giving back and making a huge difference and impact.  You are part of our NFED Helping Hands team and we thank you.

We are always looking to add more volunteers to our Helping Hands team, especially to help with advocating for the Ensuring Lasting Smiles Act (ELSA) in your area, being social media ambassadors, holding family fundraisers and so much more.

Family Fundraisers

We give a big shout out to four families who raised $72,000 for the NFED this month with their fundraisers! The Nehrkorns’ (pictured left) Bites and Brews raised $12,000. The Nelson’s (center) Minnetonka 5k made $32,000 and the Swierczewski’s (bottom) Bruno’s Golf Outing raised more than $19,000. We also thank the Reidenouer family (grandson Nikko, right) for raising $9,000 with their awareness event. They did a tremendous job and their hard work paid off!

How about attending and showing support to those who are holding family fundraisers in your area? In October, we have two Halloween-themed events, one in Pennsylvania and one online.

Jayden’s Halloween Hustle

You can run for fun and funds in Jayden’s Halloween Hustle, hosted by the Pagano family. They host this annual event in Media, Pennsylvania in honor of their son, Jayden, who is affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome (formerly known as Hay Wells syndrome). Jayden encourages you to participate.

Hi everyone, my name is Jayden and as many of you know I have Hay-Wells. I would really love it if you could participate in my run, Jayden’s Halloween Hustle. It will help others understand more about what I have and help raise money for the NFED. Thank you and don’t forget your Halloween costumes!

Will you be on the Monster or Mummy team? The team with the best time will receive a prize!

Sign Up for the Hustle

Halloween Bash

The Geismar family poses at Ryan's graduation.

For 19 years, the Geismar family has been passionately raising awareness and funds for the NFED in honor of their son, Ryan, who is also affected by AEC. What’s great about this event is that it’s all online! You can bid on some great prizes on the Bash online auction without having to put on a cocktail dress or get a babysitter for the kids.

Our goal is to raise $100,000 this year. We hope that all of you will participate whether it’s by making a donation, purchasing an ad in the online Bash journal or bidding on auction items.

Join the Fundraising Fun

Join Us

We believe you could be a big part in making family fundraising events even more successful.  These events help to create much needed awareness for these rare disorders. Will you be part of our Helping Hands team? Join us!

Sign Up to Host a Fundraiser

You Can Rock Our Goals

This is a challenging time and we appreciate all our volunteers tremendously. Your continued hard work can help us reach our final 2019 goals:

  • Have 290 legislators co-sponsor ELSA
  • Reach $35,000 for #GivingNFEDTuesday on December 3 by setting up a Facebook Fundraiser; and
  • Raise $100,000 through our end-of-year fundraising campaign to support our  research, treatment and other valuable programs, like Family Conference and Advocacy Day on Capitol Hill, first connect packets, financial assistance and of creating awareness, especially by being social media ambassadors.

Are you on board? Let’s do this!

Join the Helping Hands Team

If you would like more information on how to join our Helping Hands Program and making your mark, contact me at 618-566-6871 or lea@nfed.org.

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