Becky Abbott

By Becky Abbott

After many years of raising awareness for ectodermal dysplasias, fighting insurance denials, and contacting legislators to try and fight for insurance law changes with my family, I decided it was time to help other families struggling with this disorder. I have discovered from my experience that many doctors know very little about ectodermal dysplasias, some have never heard of it, and many have only read about it in a textbook or seen one case during residency.

I decided it was time to change that. I wanted to do more than raise awareness for ectodermal dysplasias. I wanted to advocate for children with rare diseases, try to get other families involved in advocacy and fight for change.

Aidan and Ryker Abbott
Aidan and Ryder Abbott stand outside the Rayburn Building at the United States Capitol.
Empowering Families

When I was asked to be on the National Foundation for Ectodermal Dysplasias (NFED) Advocacy Committee, I was excited to share my family’s experiences in advocating for my son, Aidan, and trying to raise awareness. Through my work as a co-chair on the Advocacy Committee, I hope to equip families with the information they need to raise awareness for these disorders that very few doctors, medical professionals, and legislators understand.

After meeting with many legislators, I was surprised to find out that a majority do not know that ectodermal dysplasias exist. I also learned that families have to fight for years or decades to get their children the medical and oral treatments they desperately need so their children can have teeth.

My main goal through my volunteer work is to empower families and get them excited to advocate on behalf of their children. Families need to have their voices heard and fight insurance companies and employers that are denying our children medically necessary treatments.

Calling All Families

I am calling upon families to reach out to their legislators, share their stories, build relationships with them. Keep in contact with them to remind them that we have elected them and they need to fight for their constituents.

Through the Advocacy Committee, I would also like to teach families the important steps that they need to take to understand their insurance policies, what is included and excluded in their coverage, what type of insurance they have and what statues or laws apply to their policy. When families understand this important information, they will be better prepared to file appeals and fight for more thorough coverage for themselves and their children.

I have enjoyed speaking and meeting other families who are excited to see change and are taking action to raise awareness, advocate and fundraise, so our children with ectodermal dysplasias can hopefully receive faster diagnosis and better insurance coverage in the future.

Advocacy Day on Capitol Hill

This upcoming year is an important one for NFED families We all have a chance to have our voices heard on Advocacy Day on Capitol Hill on July 19, 2017 . Give some of your time, volunteer, donate, attend a Family Conference or do whatever you can to get involved and raise awareness. Contact Kelley at the NFED office if you are interested in participating in Advocacy Day.

My family and I will continue raising awareness and fighting to have our voices heard. Will you join us?

Becky is the mother of Aidan & Ryder and co-chair of the NFED Advocacy Committee.

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