July has been a fantastic month for our ectodermal dysplasias community. Last week, I shared all the wonderful things that happened at our Family Conference in Portland, Ore. The excitement continued as we headed to the East Coast to meet with families for our second Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 18.
We had 100 people from 30 states advocate for the Ensuring Lasting Smiles Act (ELSA) and educate about ectodermal dysplasias. We weren’t just heard on Capitol Hill. Our families and staff were easy to spot in our bright green shirts!
You may feel like we do sometimes, that getting ELSA introduced is taking longer than we had hoped. But, in terms of our government, things are actually going very well. We are learning a lot about the process and the time things take to introduce a bill. We must be patient as we are in this for the long haul, not IF but UNTIL we are successful.
Here’s what Sen. Baldwin said.
“Together, and thanks to your relentless advocacy, we have made strong progress just since the last year since you were here for advocacy days. We have raised awareness and advanced efforts to improve care for people with this disease.”
The language in ELSA provides for all congenital anomalies, not just ectodermal dysplasias. Because of this, several other organizations are also supporting it: American Academy of Dermatology Associates (AADA), American Academy of Neurology, American Association of Oral and Maxillofacial Surgeons (AAOMS), American Association of Orthodontists, American College of Surgeons, American Dental Association (ADA), American Society of Plastic Surgeons (ASPS), Children’s Hospital of Wisconsin (CHW), EveryLife Foundation for Rare Diseases, and the Rare & Undiagnosed Network (RUN). This is fantastic!
More than 120 visits with legislators kept us all busy this year. Our advocates reported that legislators and their staff had far more positive comments than negative from these visits.
While we still wait for bi-partisan support in the Senate, we accomplished many things last week. Advocates successfully educated more than 120 people. Some were establishing new relationships while others were building on their connection from last year’s event.
It was heart-warming to see the families come together to support one another on training day and advocacy day itself. It was almost like a mini-Family Conference. Families shared their dental journeys. Seasoned advocates shared what they have said and what they have experienced to help the first-timers.
Carver Claeys, a young adult from Michigan who has been with the NFED since he was a toddler, took the time to speak to the younger kids about his dental journey. Carver continues to be a great role model for all of us.
It was great fun to see families finally meet, in person, after communicating for months, possibly years, via Facebook and email. One mom shared on Facebook that her son said he didn’t feel alone for the first time. How can you beat that?!
The Walkers Go to Washington
Each of our NFED advocates has a unique Day on the Hill story. Watch this video to see one family’s experience. Randi Walker traveled from Louisiana with three of her four kids to participate.
So, you see, yes, this day at Capitol Hill was still a success, even though our work is not yet done. We still need that Republican Senator in order to introduce ELSA.
We thank all of the volunteers on our Family-Driven Legislative Advocacy Committee who help us chart our course: Becky Abbott and Beth Pond, co-chairs; Julie Claeys, Christine Gottschalk, Karl Nelsen, Jen Steele and Sean Vora. Becky, Beth and Allison did a great job training families. We also appreciate Aidan Abbott and Allison Steele for leading our kids’ advocacy training. We are also grateful to Julia Jenkins from the EveryLife Foundation for Rare Diseases who presented at our training day.
Day on the Hill is over but our work is not. Watch your email for updates and ways to advocate for ELSA. We have also added advocacy resources to our website you might want to check out. You can also find new information to help you prepare for a meeting with your legislator.
Remember, we can’t do this without you. It’s your story and your voice which your legislator will listen to. Getting ELSA passed is a marathon, not a sprint. We hope you will keep running this race with us!See Day on the Hill Photos