At the National Foundation for Ectodermal Dysplasias (NFED), we have some of the best volunteers around! Our volunteers share their time, money and skills to assist as social media ambassadors, advocates, family liaisons, office workers, writers, bloggers, editors, financial advisors and so much more.

They create family fundraising events and serve on numerous committees and many help behind the scenes. To show our thanks for our volunteers, we created the volunteer spotlight years ago to feature one of our amazing volunteers or a group of volunteers but especially during April which is Volunteer Appreciation Month.

Volunteering During a Pandemic

Julie Carroll is a busy mom and health care worker who found time to fundraise and be a social media ambassador for the NFED. Thank you, Julie!

Last year, was an extremely hard year for all of us, including the NFED. But, it was also rewarding to see so many of you step up to the plate in many different ways. We give a huge shout out to those of you who continued to be active volunteers during the 2020 COVID-19 year.

You thought outside the box and continued to advocate, educate, participate, engage, empower and fundraise with us and for us. We learned together to go virtual and use our social media platforms to get information about ectodermal dysplasias out to the masses. We were humbled. Thank you.

How the Pandemic Impacted Fundraisers

One of my tasks as a community engagement manager is to engage and empower families and also non-families with the NFED in every aspect of our organization and in the process, generate money for our numerous programs.

Some of our family fundraising events had to be postponed to 2021. Some were cancelled. Others went from on-site to virtual and some voiced their desire to hold a first-ever one in 2021.

When you couldn’t have in-person fundraisers, many of you chose to create Facebook Fundraisers for your birthdays or to raise funds for our Forever Strong Campaign, Forever Forward – Research Campaign, #GivingNFEDTuesday or Hope Campaign.

Your fundraising generated close to $45,000, which is amazing!

Going Social To Raise Awareness

Jake and Amy Coleman are great social media ambassadors for the NFED, sharing posts to educate others.

Thank you for sharing your passion with your social media family and friends. In the process, you created awareness for the NFED and ectodermal dysplasias. You did a wonderful job being our social media ambassadors to get the word out on the different platforms about everything we posted and shared with you. Keep up the good work!

We still have a ways to go before this pandemic is over. We hope that more volunteers will take the initiative to be more active on our social media platforms.

You can help us reach more people to educate them about the NFED, ectodermal dysplasias and the Ensuring Lasting Smiles Act (ELSA). Continue to be our social media ambassadors.

Are you interested in becoming a social media ambassador? Sign up now.

Ready to Raise Some Funds?

Of course, all that we do can’t be accomplished without raising money. Will you help us? There are several options you could consider.

If you can’t help at this time, consider an NFED fundraiser for sometime during 2021, maybe during your birthday month. We have many ideas to get you thinking or you can always contact me.

How Facebook Fundraisers Work

We receive lots of questions each year about Facebook Fundraisers. We have had NO issues with receiving 100% of your donation from Facebook. The platform does not charge any fees for donors’ Facebook donations.

If you live outside of the United States, your donation is converted into U.S. dollars on the day of the donation. The NFED receives Facebook donations deposited into our bank account twice a month.

We appreciate Kathy Fodor for creating a Facebook Fundraiser for her birthday in 2020. What a great way to celebrate!

You will receive a tax receipt directly from Facebook, not from the NFED. The NFED only receives a report of the donor’s name, date and amount of donation, the event/birthday name and the name of host who set up the fundraising page.

We do not receive your address or email information. The NFED thanks each donor directly on the fundraising page for their donation. We try to soft credit those donors who we know are in our database.

Set Up Your Facebook Fundraiser Today

Other Ways You Can Help

Here are other ways you can get involved with the NFED in 2021.

  • Did you know you can donate through Instagram as well? Have you noticed we are more active on Instagram?
  • Continue to help us raise awareness by sharing our posts, tweets, pictures, blogs, news articles and any information that you think will educate others about the NFED and ectodermal dysplasias. Be active on our social media platforms. Be our social media ambassadors.
  • Contact your family liaisons and ask them questions.
  • Contact our office at 618-566-2020 to talk to our knowledgeable staff.
  • Contact your state lead if you are interested in being an advocate.
  • Be proactive and keep learning about ectodermal dysplasias. Visit our library or sign up for a webinar.
  • Be a fundraiser.
  • Ask your employer to match your gifts.
  • Ask your employer to sponsor an event.

We need you now more than ever! Create some noise and use your voice. Think outside the box.

Ready to take action?

Are you thinking of volunteering for the NFED? Please fill out our volunteer form and I will be in touch with you.

Sign Up to Volunteer

If you have any questions or need more information, don’t hesitate to email me or call me at 618-566-6871.

Let’s move forward into this new year with enthusiasm, kindness and empowerment. Everyone has something to offer no matter how small or large. THANK YOU! Please, stay safe and healthy.

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