Celebrating Our Dedicated Volunteers!

The National Foundation for Ectodermal Dysplasias (NFED) faces far-reaching and somewhat complex challenges. The solutions often feel out of reach. But, with our volunteers’ help, they become attainable – even in a pandemic!

The pandemic affected every facet of life. The NFED is no exception. This past year, we developed new strategies to break the mold of past practice and create something new.

Who would have thought Zoom meetings, webinars and other virtual tools would become the norm? Together, we learned and embraced change.

Dr. Clark Stanford is one of the many experts on our Scientific Advisory Council who volunteers to lead our many educational webinars.

Amidst cancellations and postponements of activities and events, modifications of in-person services, we have seen the emergence of virtual gatherings, virtual support services, and online communities.   

The NFED thanks all of you who stepped up to help the NFED through mostly virtual events. We also recognize those of you who stepped back from volunteering for a while to adjust to the virtual world. You are all special to us. We appreciate you!

Let’s Hear it for Our Volunteer Crew!

Aubrey Vora (top center) and other volunteers created a virtual Kids Camp for our affected children and their siblings last summer. They kids connected and played fun games together online.

The support and collaboration of our NFED families, volunteers, and friends has been very much appreciated. We are grateful to all members of the Board of Directors, the various committees, advocates, and liaisons who have reached out and extended themselves to help. 

B. A. Enterprise & the Reidenouer-Vecchini family are hosting their “Nikko for NFED” fundraiser on September 18.

We know that leading during these unpredictable dynamics was certainly challenging, when you had your own work and family lives disrupted. We could not have managed through this difficult time without your support, wisdom, encouragement, and practical advice. 

Our NFED staff is grateful to all of you who have been with us on this journey, zoomed your hearts out, produced some amazing virtual family fundraisers and the 20th Halloween Bash, presented on webinars, written or interviewed for guest blogs, provided financial advice or financial support, volunteered in other ways, or stayed back from volunteering to keep everyone safe.

Hands down, you are the best volunteers around. We can’t mask it, we appreciate you!

Looking Forward

How can the NFED sustain our high level of care for the long-haul, as the different stages of the pandemic response unfold? With your help and engagement.

To tackle our greatest challenges and build a better future for the ectodermal dysplasias community, we invite you to join us to make a positive difference. You are the Voice of the NFED. You are the one to help us create awareness and raise the money to fund our work. You are the one to help us advocate. You have the power to make a huge impact.

Tom Richardson volunteered to help us prepare our Halloween Bash invitation mailing last fall.

Now more than ever, we need to find the inspiration, creativity, and sustained energy to advance research, support families and develop better treatment options. The key is to ensure that you feel empowered to act on your unique desire to stand up and say, “I can help. I can make an impact.”

Our challenge: How can we create a way to make it easy for every individual to take action and accelerate change? Could it be the Value of One, The Power of Many Voices? 

Volunteering During a Pandemic

Here’s how we are managing in the pandemic and how volunteers can help.

  • The NFED continuously assesses the risks and the needs to figure out the safest, most effective ways to deliver our programs. We quickly modified our services with our families’ health and safety as a priority. Rather than canceling things, programs and events like our Conference from the Couch webinar series, virtual Kids camp, Virtual Day on the Hill, Virtual Halloween Bash all went online. We hope to be able to be together in 2022 in person to celebrate our 40th anniversary. The Foundation will be flexible and always act in your best interest.
A pandemic didn’t slow the Abbott family down in their advocacy efforts to get the Ensuring Lasting Smiles Act passed! They participated in many virtual Hill Days.
  • For now, we might not have a volunteer role for you unless you are willing to hold a virtual fundraising event or an in-person event in the fall. You could also advocate for the Ensuring Lasting Smiles Act or raise awareness as a social media ambassador. Be patient with us as we continue to adjust to an ever-changing and unpredictable situation. We may be waiting for clearance to engage volunteers, developing the necessary training, acquiring the needed personal protective equipment, or creating systems to ensure the safety of you, our volunteers. In the meantime, the NFED continues to request your help to raise money and awareness for research and treatment, to serve the vulnerable, and to provide information and support by sharing, commenting, liking our social media posts.
Discover Volunteer Opportunities

If you are ready take out action, fill out the volunteer form.

I’m Ready to Volunteer
  • Always keep health and safety in mind. However you choose to serve and help, always prioritize your health and safety, and the health and safety of others. We value and appreciate you!

We Need Your Voice!

Thanks for doing what you can to be a part of the NFED! With change comes opportunity, a new perspective, a new practice, a new pursuit for assessing and altering the direction now and in the future. Are you willing to continue to help us prosper and serve those affected by ectodermal dysplasias?

The Nelsen family in Minnesota held a successful fundraiser last summer to raise money for the foundation.

The NFED values the awe-inspiring, caring, kind and compassionate acts that each one of you has shown this past year and continues to show. We recognize the power of many voices working together, enabling us to thrive together. Thank you!

The Value of One. The Power of Many Voices. Our Volunteers are the best!

Thank you! If you have questions or would like to talk about how you can volunteer, contact me at lea@nfed.org or 618-566-6871.

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