Volunteer spotlight

“I like to put my time, effort, and work toward something I feel strongly about.”- Jeanne Wang


Jeanne Wang
When she isn’t volunteering, Jeanne enjoys painting.

Jeanne Wang has dedicated her life to causes that are near and dear to her heart. She has volunteered her time in the public school system, in private organizations, and in parent organizations as her children have grown. Now, she is a member of the Smithsonian Institute Women’s Committee and an active volunteer for the National Foundation for Ectodermal Dysplasias (NFED).

Jeanne’s talents were put to good use this summer when she helped organize the 2017 Family Conference. She worked with Marc Steingesser and Kristin Matus-Kelso to locate and finalize a venue for the Conference. This year was her family’s fifth Family Conference in the past 10 years that they have been involved with the NFED.

Jeanne Wang
(Left to right) Tyler Huxman, Zemery Dennis and Nollan Wang became friends at a Family Conference when they were young. Every Conference, they like to re-create this pose!

When Volunteering is Powerful

The NFED has played a special role for the Wang family. Jeanne’s youngest son, Nollan, was diagnosed with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. Jeanne found information and support through the NFED.

She remembers her family’s first Family Conference fondly. It was a life-changing event that reassured Jeanne that her son would be able to thrive with his EEC.

“Volunteering is most powerful when I can help a new family and see that I can make an impact in their life.”-Jeanne

Jeanne’s main reason for volunteering is to give other families the same feeling she got when she joined NFED.  She states that it is time for her and her family to give back to the organization that helped her so much when she was first learning about ectodermal dysplasias and EEC.

Jeanne took the teens attending the 2017 Family Conference to see sights in Washington D.C.

Giving back has taken various forms for their family. Aside from helping organize the venue for the 2017 Family Conference, Jeanne has hosted gatherings at her home, contributed to the NFED scholarship program, and chaperoned the Teen Outing at the 2017 Family Conference.

It’s a Family Affair

Jeanne Wang
(Left to right) Lauren, Audrey, Nollan, Jeanne and Gary Wang

Like mother like daughters! Jeanne’s two daughters, who are unaffected, started an NFED club at their high school to raise awareness. They have also volunteered at Family Conferences in the past in Kays’ Kids Camp.

Most importantly, Jeanne emphasizes that volunteering with NFED is easy to do. Different opportunities and events suit different schedules. Every little bit counts!

“Nothing is more gratifying than seeing others make the most of their lives, despite their challenges.”-Jeanne 

For Jeanne, education about ectodermal dysplasias is the most important aspect of her volunteering. Through volunteering, Jeanne has gained tools in her daily life to educate and has had more moments to teach others.

Jeanne plans to continue working with NFED far into the future. Her goal is simple: share her experience and bring awareness to ectodermal dysplasias.


Learn more about how you can volunteer for the NFED.

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