By Susan Hamm

Susan and Zach in San Francisco, CA Mother & Son 2015 Summer Trip
Susan and Zach in San Francisco, 2015

I’ve always been the type of person to volunteer for projects or causes I was passionate about and the NFED was no different. I attended my first Family Conference and came home with an overwhelming amount of information on this syndrome that I had barely learned to pronounce.

After processing what I had learned, I wanted to know more. I wanted to do more. I became a Family Liaison so that I could help families near me connect with the NFED, give them as much information as I could, and provide advice or share my experiences. I had been “that mom” who had never even heard of ectodermal dysplasias before my son was born. I wanted to help other parents that might not otherwise have help or know where to find it. By doing so, I met so many wonderful people, many who feel like family.

Zach has his driver's permit and is a sophmore in High School.
Zach has his driver’s permit and is a sophomore in High School.

Several years ago when Edimer’s Newborn XLHED Clinical Trial was just in its planning stages, I thought to myself, here are people who have the knowledge to possibly change the lives of people affected with ectodermal dysplasias. I realized that I didn’t have that capability but I could do things within my skill set to help this cause.

My family and I discussed how we could help make a difference. Since my son Zach and his dad, Paul, were golfers, we decided to host a golf tournament benefiting the NFED. It took some planning and enlisting help of neighbors and friends. But anything worthwhile takes work. We hosted four successful “Zach Hamm Don’t Sweat It Golf Classics” that raised close to $150,000 for the NFED. We accomplished this just by running the tournament from our kitchen table.

Baseball Journey Fundraiser
In addition to the Don’t Sweat It Golf Tournament fundraiser, “My Baseball Journey” was written by Bill Brown. Zach was his inspiration and all proceeds were donated to the NFED.

The Family Conferences are such a wonderful way to meet other families, gain knowledge and experiences and share. So, when the NFED asked for families to help plan the conference, I volunteered and I have been on the planning committees for the last four conferences. It’s such a great feeling to have people from all over the world attend an event that you helped plan and watch them enjoy themselves, gain knowledge and empowerment.

I’ve done all this volunteering while having a job and giving my time to other organizations as well. I made the choice to make time to make a difference. Volunteering with the NFED has made me feel as if I have helped make a positive impact on the organization and hopefully made a difference in someone affected by ectodermal dysplasias. I wanted to give back to the organization that gave me hope. You can, too. Everyone has something to contribute. The NFED is what we make it!

Memory Booth TX

Editor’s Note:

Susan Hamm lives in Spring, Texas. Her son Zach is affected by ectrodactyly ectodermal dysplasia – clefting syndrome or EEC syndrome. Susan is the Family Liaison for Texas.

Would you like to volunteer with the NFED? Email Lea Richardson, NFED manager, community engagement, at or call her at 618-566-6871. You can also learn more about volunteering on our website .

Share your Story

Leave a Reply

Your email address will not be published. Required fields are marked *