My name is Tiffiny and I am the National Foundation for Ectodermal Dysplasias (NFED) Advocacy State Lead for Utah! My family and I live in Murray, a suburb of Salt Lake City.
My husband is Brenden and we have three children, Grayson, 11; Kairi, 9; and Lia, 6. My daughter, Kairi, and I were both born with cleft lip and palate. I found out about the Ensuring Lasting Smiles Act (ELSA) through SmileTrain. After sending emails to my legislators for a few years, we took the leap to get more involved when Kairi and I headed to Washington D.C. for the 2024 NFED Advocacy Day on Capitol Hill.
Creating Our Own Advocacy Day Plan
This summer, Kairi and I were very busy! We had a goal to meet with all of our representatives and senators while they were in recess in August. We ended up meeting with both senators’ offices, our representative’s office, and another member of the Utah delegation. I took a multistep approach to make that possible.
Email Them to Introduce Yourself
First, sending emails. This is the easiest step. At the beginning of summer, I sent emails to each office, shared our story and asked if they would be a co-sponsor. Starting in early July, after sharing our story, I emailed again asking if they would be a co-sponsor and if I could set up a meeting with them.
If I didn’t hear back from them within two weeks, I sent a follow up email. I did hear back from Devon from Rep. Burgess Owens’ office, and we emailed over the next month. This one led to an in-person meeting with Rep. Owens, who signed on as a co-sponsor.
Request A Meeting
Second, requesting a meeting on legislators’ websites. Every legislator in Utah has a website. On the website, there is a button/tab/form that says “request a meeting or contact.” Sometimes when I made a request through email, they sent me to that legislator’s website to fill out the form.
It was fairly easy. You will need to check what they ask for in your state but in mine they wanted the names of people attending and their city, organization names, the location of the meeting, the date I had in mind, and my reason for requesting the meeting. In my meeting request, I would usually say that the date and time were flexible. If I hadn’t heard back by email after a few days to a week, I would email or call the office.
Call Them
Third and finally, making phone calls. This step was the most challenging, since it was difficult to always get a person on the phone. I called each office once or twice a week. When they answered, I would tell them, “I am calling about the Ensuring Lasting Smiles Act. I am a constituent in Murray, Utah. This act is important to Utahns and to people like my family.” I would then tell the person on the phone our story and ask for a meeting.
My Meetings Were Productive
Each approach had value and helped get a meeting. Emailing got me connected with Rep. Owens’ aid, Devon. He is so kind. We talked through email for a month or so. Then, Rep. Owens signed on. I then emailed Devon and asked if we could have a meeting with Rep. Owens so we could thank him for his support in person.
I requested a meeting through Sen. Mike Lee’s and Sen. Curtis’ websites. We met with Barry from Sen. Curtis’ office after filling out that form. For Sen. Lee’s office, I called on multiple occasions after filling out the online form. The woman I spoke with was so kind, her name was Marissa. She talked with me so much and remembered me each time I called. She helped to make sure the scheduler reached out to me. When we had our meeting, we met with Derek and Marissa sat in our meeting.
Finally, I had a meeting with Rep. Blake Moore’s aid, Andrew. This meeting was virtual, since he is their D.C. aid. This meeting came from filling out the form on Rep. Moore’s website and through Devon from Rep. Owen’s team who connected us. Although I did not get to meet with Rep. Celeste Malloy’s or Rep. Mike Kennedy’s team, they did respond to my emails.*
Meeting Face to Face Is Critical
To me, the in-person approach is so important. It provides a face to name. This helps them see the real people that this legislation affects. It tells them this is an important cause to me and to the people of Utah.
I was able to bring resources with me to present to them; the ELSA one pager from the NFED website, the patient case studies from the NFED website, and a copy of my and my daughter’s stories. I could answer questions in real time, and I created connections that help me talk to more people about the importance of ELSA. I also get the wonderful opportunity to show my daughter that we can reach out to our legislators with something so important and they listen.
Please Be Kind
I want to add one more bit of advice to advocates: be kind. The people behind these screens are real people. The people on the phones are real people. Saying thank you for your time, acknowledging the time spent listening goes a long way, and if you’re calling, (the people answering the phones hear a lot of bad), it only takes a moment to say, “I know your job is hard, but I am so grateful you took the time to listen to me.”
We can open a lot of doors by being kind.
Tiffiny is a guest blogger for the National Foundation for Ectodermal Dysplasias. She is an NFED Advocacy State Lead for the Ensuring Lasting Smiles Act and lives in Utah.
Are you ready to advocate at home or in D.C. for ELSA? Check out this resource to help you.
* Editor’s Note – We suspect that Tiffiny didn’t hear back from these legislators because she was not a constituent of their district.
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