By Lisa MacDonald

Because of Norma.

Norma is my sister-in-law. I’ve known her for over 32 years and she is a brave, wickedly funny, fiercely strong and kind person who has been through a lot on her life. She lives in beautiful, rural Nova Scotia. We live in Toronto. Here is a short video about her life with ectrodacyly-ectodermal dysplasia-clefting (EEC) syndrome.

Our family enjoyed the NFED’s 35th Anniversary Celebration Gala in St. Louis in 2016. Pictured left to right are Joe, Elizabeth, Norma, me and LeRoy MacDonald attended the

My husband, LeRoy, has attended five National Foundation for Ectodermal Dysplasias (NFED) Family Conferences with his sister Norma, their brother, Joe, from Winnipeg and his wife, Elizabeth. I have attended four of them. Over the years, Norma has learned so much about her own health and has become an expert on her medical needs by attending the conferences. Our whole family has learned alongside her, supported her through the emotional challenges and shared the bonds of friendships formed there.

Norma was 50 years old before she met Jack Kriz and Terri Andrews, who are similarly affected by her exact kind of ectodermal dysplasia, EEC. She could never have imagined that there were other people who looked just like her. Can you imagine how lonely and scary her life must have been up until then? We never want another child or family of that child to feel so alone. That is why we try to help as much as we can at the conferences.

Here is the group of tweens we got the pleasure of chaperoning at the 2017 Family Conference.

LeRoy and I have volunteered at the registration desk in Columbus, Ohio, greeting new families and helping everyone get their bearings. This year, we had the pleasure of meeting eight amazing kids when we chaperoned their field trip to several Smithsonian museums in Washington, D.C. while their parents took in the workshops. It was a real pleasure getting to know them and since our own kids are all grown up, we learned a lot about this next generation of pre-teens.

Norma MacDonald
Norma always supports the Chance Auctions at the Family Conference by donating baskets.

Norma’s eyesight has been severely affected over the years because of photosensitivity and corneal damage because her eyelashes grow inward. Although Norma would love to be more involved, she isn’t as able as we are to volunteer at the conference. She does contribute by gathering and donating prizes for the silent auctions and takes great care to curate interesting and desirable items.

I guess the best thing about volunteering for the NFED is the inclusivity that we feel as part of Norma’s “team.” Every one of these kids has a “team” supporting them. Even though Norma isn’t a kid anymore, it is through her that we have met so many wonderful kids and families. It’s because of her that they welcomed us into their NFED family. Our favorite part of going to conferences is connecting to so many wonderful people.

Please consider giving your time helping at the NFED Family Conference in 2018. You’ll love it!

– Lisa MacDonald is a guest blogger and volunteer for the NFED.  We are always looking for new volunteers. See how you can help

4 comments on “Why We Give Our Time To Help The NFED”

  1. 1
    Kimberly on January 2, 2018

    Hi, my name is Kimberly. My daughter was diagnosed as a young child after years of me wondering why was she different from my other two daughters. Due to very little knowledge about ED, I had no way of knowing why my child would be different and would endure lots of mean people to come in her life. She’s 24 years old now and has talked of harming her self. because she’s different. She’s depressed all the time. She honestly thinks that she doesn’t have friends is due to her condition. She meets guys but soon afterwards she starts to go into with drawl from the family because the friendship or relationship didn’t work. She thinks it’s because once they sees she’s different or starts to ask question about her teeth, they back away from her, like she’s a monster. Her speech is affected greatly because of this. She’s bitten off part of her tongue before after fallen as a child. I pray some day I can find a way to fix her smile. That would give her a place of peace knowing that she can actually smile and not be judge by her teeth. She’s sad all the time now, which makes me sad and feel responsible for her being this way. We live in the Atlanta Georgia area and would love to hear back from someone that could possible direct us in the right path. I worry about her, far too often she’s left feeling depressed. Thank You in advance!

    1. 2
      Kelley on January 3, 2018

      Hi, Kimberly. I will reach out to you today.

  2. 3
    Jill Cohen on January 27, 2018

    Our extended family has many members with Clouston Syndrome or hidrotic ectodermal dysplasia. In my close family, my aunt and grandmother were both affected. The surname of my great-grandmother is Thibodeau or Thibideau. Her mother’s surname was Bechard or something close to the sound of it. I am trying to find out which side of the family we inherited the Clouston’s syndrome from. I am putting together a family tree on and am very interested if there are others with these same surnames that have ectodermal dysplasia. Thank you for any kind assistance with my genealogy research. Sincerely, Jill Cohen, Middlebury, Indiana

    1. 4
      Denise Larin on August 31, 2018

      Jill, I am a genealogist and have many links to CS in the different trees I’m working on (south Province of Quebec, northern USA, etc). Please email me with details on the families you are searching (Thibodeau, Bechard, etc), or please give me the link to that tree on Ancestry that you are talking about.

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