Terri and Jerry Matus
Jerry and Terri Matus

By Terri Matus, Grandma of Allyson Kelso, Member, Family Support Council and Co-Chair for Rally for Ally

There are many reasons to volunteer one’s time for an organization.  The obvious one is to be helpful and to assist others in order to enhance the programs provided by the organization, namely, the NFED.  I like to think that volunteering is a much bigger responsibility.

I think of volunteering as “service” to the organization by giving one’s time,  providing verbal input in meetings, and taking responsibility for both engagement and involvement in the organization.  One can sit on the “outside” and always “look in” and nod and say: “What a fine job the NFED is doing to assist families with the associated challenges and needs that come with ectodermal dysplasia.”

I prefer to be engaged and involved by offering knowledge that comes from life’s wisdom, education, and being an educator for 49 years.  I like to think that my experiences place me in a position of being able to interact and communicate with many.  The community I serve is the community of “family” in the NFED.

I have learned that by volunteering I am a real part of the organization.  When I first became associated with the NFED, I was a spectator watching and learning. Now, I am a leader who gives back to those families who are new participants.

I have been involved in dialogue about the “buddy system” for several years. I have been involved in planning a Family Conference a couple of years ago in Houston.  I have been involved with our family’s fundraiser, “Rally for Ally” for the past 12 years. I was part of the scholarship selection committee for several years.

And, I have been on the Family Support Council for the past four years where we attempt to find better ways to serve the families and the communities in raising awareness and providing assistance to the greater population in all areas.  I volunteer each year at Family Conference with registration and greeting the attendees.

What I look forward to each time I volunteer is the knowledge that I may have made a difference.    Being part of the NFED may have helped someone in ways  I don’t even know.  I don’t think volunteering has changed my life, but it has enhanced a life of service.

Rally for Ally 2015
Terri with her daughters and their families host Rally for  Ally every year.

Anyone can volunteer. Just say, “What can I do?”  I promise you someone will grab your hand and show  you the way.  Anyone can fundraise.  Think of an idea. Start small. Ask friends and family to assist in the endeavor.

Be sure you are having fun with whatever you decide to do. If it isn’t fun, it won’t grow.  The more you give back, the more you will receive in knowing that your time, your engagement, and your special talents have helped not only the organization, but the people involved in the organization.

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