Our National Foundation for Ectodermal Dysplasias (NFED) volunteers logged 5,000+ hours in 2018! We had more than 500 active volunteers who completed tasks ranging from advocating, hosting fundraising events, volunteering at the Family Conference, writing stories and inspirational blogs, being on committees, serving on the Board and councils, raising awareness, hosting Facebook fundraisers and so much more.

It is mind boggling the tasks you accomplished to help the NFED and those affected by ectodermal dysplasias. You shared your time and talents without any compensation. Thank you! We tremendously value all of you who help us accomplish our goals.

The compassion you show is an inspiration for us all. We know how stressful it can be for people who find themselves in need of the services we provide. We know that words and actions go a long way toward helping others.

You could choose to stay or walk away at any time. We know that you are very critical to the success of the NFED. You are super special and we know what a treasure you are.

We recognize your efforts and appreciate all your hard work. You are the heart and soul of the NFED. The impact of giving of your time, your energy, and your heart and your soul is immeasurable.

Poet Kelley Roper conveys our sentiments well.

Dedicated hearts like yours
Are not so easy to find.
It takes a special person to be
So generous and kind.
To care so much for your fellow man
Is a quality all too rare.
Yet you give of your time and talents,
For all in need to share.
So thank you for being a volunteer,
We’re privileged to work with you.
We want you to know how appreciated you are,
Not only today, but the whole year through.

Volunteer Opportunities

We need volunteers to help us in several areas.

Social Media Ambassadors

Do you want to be an NFED Social Media Ambassador? Are you active on Facebook, Twitter Instagram or other social media platforms? Would you be able to spend as little as 30-60 minutes a month sharing NFED-related information on your social media accounts and interacting with NFED’s posts by sharing, liking, and commenting?

As a social media ambassador, we ask you to help spread the word about ectodermal dysplasias and NFED’s work with your network of friends, family and other contacts. We have created an easy to follow Social Media Ambassador Toolkit. Interested? Let us know! We’ll get you started.

Sign Up to Be A Social Media Ambassador

Advocacy State Leads

We are looking for volunteers who would be willing to be an advocacy State Lead in the following states:


South Dakota

State leads assist our advocacy efforts to seek support from federal legislators in their state or district for the Ensuring Lasting Smiles Act (ELSA). This bill was re-introduced in February in the House (H.R.1379) and Senate (S.560).

You need to be eager to advocate and share information with families in your state on how to advocate for ELSA. You are encouraged to attend our Advocacy Day on Capitol Hill in Washington D.C., July 16-17, but it is not required.

If attending, State Leads serve as mentors and lead their group in their legislator meetings. They introduce their group, explain the purpose for the meeting, provide and leave behind materials provided by the NFED. They also keep track of time, so the day runs smoothly.

State leads make sure that their group arrives at all scheduled appointments on time. Many of the state leads also schedule in-state meetings with their legislators and ask other NFED families to join them. Interested? Let us know! We’ll get you started.

Sign Up to Be a State Lead

Host a Fundraiser

How about holding a Facebook Fundraiser, an actual fundraiser or a Don’t Sweat It Walk? You can start small and build on growing your fundraiser for next year. We are here to help you through the process in any way we can. Interested? Let us know! We’ll get you started.

Start Your Fundraiser

Shopping Online for NFED

If you are an online shopper. consider using the Amazon Smiles program. The NFED will receive a percentage of your purchases made. Use to choose the NFED as your charity. How easy is that? This is another way that you can make an impact.

Please, consider lending us a helping hand and making your mark! Fill out our volunteer form. Thanks.

Sign Up to Volunteer

For more information on how to join our Helping Hands Program and making your mark, visit our Volunteer page. You can also contact Lea at 618-566-6871 or lea@nfed.org.

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