By Beth Tascione

When our daughter cut her first tooth, my husband and I noticed it was differently shaped. We had no other children, and while we knew teeth weren’t usually pointy, we didn’t really think much of it.  Then, when her second tooth came in the same way, we got curious.

We mentioned it to our pediatrician, and he didn’t have any answers, nor did a pediatric dentist we went to. Curious, confused and even a little concerned, we poked around online and found a genetic condition called ectodermal dysplasia. When we read more about it, we started wondering if our sweet one-year-old daughter could have this condition, too.

Her fingernails were brittle, she had no toenails, had very little hair, and a few cone-shaped teeth. At age 2½, we met with a geneticist who confirmed that Maddie Rose had ectodermal dysplasia.  From that point on, we made it our focus to find out as much as we could about this condition.

Yoga for NFED

Thank goodness for the National Foundation for Ectodermal Dysplasias (NFED). Their support, knowledge, and guidance have been so valuable to us. From the moment we reached out to them, I knew that I needed to do something to support the foundation, in the same way, they were supporting us. As a yoga teacher, I always ran donation-based classes to support causes that I believed in and what better organization to support than an organization that is so vital to the well-being of my child.

I ran my first “NFED” donation yoga classes in the summer of 2015.

It felt so powerful to share information about this condition and to educate people about it.

No one who came to my classes knew about ectodermal dysplasia. But, by the end, they knew a little bit more, and some even met my daughter (then 3) who practiced some yoga with us in our local park.

Maddie and I doing our yoga in the park.

I continue to raise money for the NFED through Facebook and am even starting a community class at one of the yoga studios I teach at, where a portion of the proceeds will be donated to a charity.  The NFED will be our first organization to spotlight!

Support A Cause

There is nothing better than doing work that you love while helping to support a cause that is near and dear to your heart. As a family, we attended our first Family Conference in 2017 and volunteered at the registration table which was an awesome experience. We were so impressed with the Ectodermal Dysplasias Advocacy Day on Capitol Hill in 2017 that we decided to volunteer to be the state leads for Massachusetts for future NFED advocacy efforts.

My husband, Jonathan, met with a representative from Senator Elizabeth Warren’s office at the NFED’s Ectodermal Dysplasias Advocacy Day on Capitol Hill last summer. Kristen Nichols, Beth Pond and Lillian Brown joined him in telling their stories about ectodermal dysplasias.

My hope is that through our fundraising and volunteering efforts, that we not only make folks aware of ectodermal dysplasias and the work that NFED does, but that NFED receives the awareness and funding they need to continue to do all of the wonderful things they do for the families they serve. Knowing that NFED and the supportive community they’ve created are always accessible and available have made going through all of these new experiences and challenges a lot less scary.

Supporting the NFED and the work they do to help support families, educate communities and support and share research, is vital not only for our family but for all of the families that are touched and will be touched by ectodermal dysplasias.

 

– Beth Tascione is a guest blogger for the NFED. She lives in Massachusetts with her husband, Jonathan Weil, and their daughter, Maddie, who is affected by ectodermal dysplasia. They volunteer for the NFED as advocacy state leads for Massachusetts.

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