By Jennifer Hagerty

Jennifer Hagerty II
My son who is affected by AEC syndrome.

Have you ever thought about how you can make a difference to the NFED and the families they serve? As a NFED family liaison, I have thought about it many times.

I am a busy mom who is going to school as well as taking care of my two young boys. Needless to say, I don’t have a lot of time to dedicate to fundraising, but I knew I wanted to make a difference.

I decided to host a Don’t Sweat It Walk. It took some effort and time, but in the end it was gratifying and worthwhile.  We had a lot of fun and were able to raise awareness and funds for the NFED.

Hagerty
My sons show off the NFED information table.

I started by establishing a location. For me it was simple. My son has AEC syndrome and struggles with skin erosion and sensitivity to light, so I chose to do a Don’t Sweat It Walk at a local mall.

The mall coordinator was very welcoming and happy to help, going above and beyond the call of duty to ensure the children in attendance had a fun time.The NFED had a very simple template to follow for a letter requesting donations or sponsorships as well as raffle/auction items that I used when writing my letters.

I walked through the mall from store to store and gave each manager a letter. Then, I connected with local sports teams, museums, car dealerships, golf courses, salons, day spas, and restaurants to request donations for our raffle/auction. I was surprised at the responses. They were so excited to help!

To spread the word about our Don’t Sweat It Walk, I contacted a local magazine, radio stations, and news papers. I set up an online registration site as well as a Facebook event page that allowed people to share the information with friends and family.

The day of the event, we set up tables for our raffle items, NFED info, t-shirts, walk registration forms, and a few refreshments for our walkers. When finished with their laps, the walkers were invited to a variety of events. There was a free class at a dance studio, an exciting display of the slithery kind at the reptile store, a complimentary train ride around the mall, and a carousel ride. They were even offered a free pretzel and lemonade.

Jennifer Hagerty I

Over all, it was a fun way to spread awareness in our community, establish bonds with other local families who are also touched by one of the ectodermal dysplasias, and raise much-needed funds for the NFED, who makes a difference to all of us year after year.

If you find yourself in similar shoes, wanting to make a difference but not sure how, please don’t hesitate to pick up your phone and call Lea Richardson at 618-566-6871 or email her lea@nfed.org. You can also contact Seth Ferris at sferris@nfed.org.

Tell them your ideas, see if they have suggestions, and run with it. It can be anything from a raffle or auction, to a Don’t Sweat It Walk / Run, to a yard sale or a bake sale. It doesn’t have to be big or fancy.

Every effort, no matter how small, makes a difference. It has been said that we should be the change we hope to see in the world. If we all take little steps to make a difference, it adds up to be HUGE.

Other Volunteer Stories to Inspire You:

Support Each Other: We Are Family!

Many Hands Make the Work Light

A Chance Meeting Changed My Life

Share Your Story

8 comments on “A Little Step May Be the Beginning of a Great Journey!”

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