We have provided some materials and resources to help you advocate and prepare for meetings with your legislators.
Information about ELSA
The following documents summarize information about the Ensuring Lasting Smiles Act (ELSA).
Download ELSA One Pager
Download ELSA Issue Brief
Download Letter from Organizations Supporting ELSA
Document updates coming soon:
- ELSA Section by Section Summary
- ELSA FAQ
Sample Letters/Email to Send to Legislators
Review each of these sample letters to see how ELSA advocates personalized their letter and shared their stories. We have tips on how to tell your advocacy story and practice it for success.
- Sample Letter 1: Parent of Child Affected by Ectodermal Dysplasia
- Sample Letter 2: Parent of Child Affected by Ectodermal Dysplasia
- Sample Letter 3: Cleft Lip/Palate Patient (Coming Soon)
- Sample Letter 4: Congenital Cataract Patient (Coming Soon)
We also have sample letters for people to use if they have extended family members or friends who are affected by ectodermal dysplasias, however these can be customized to accommodate other congenital anomalies.
Advocacy Template Letter (Update Coming Soon)
Leave Behind Materials
In addition to print copies of your personal letter, we recommend that you download and print the following materials to leave with your legislator. They provide additional information on the challenges of living with a congenital anomaly.
Patient Case Studies
This sheet features stories and photos from ten individuals and families who have congenital anomalies, including ectodermal dysplasias. It depicts their treatment journeys and challenges in getting insurance benefits to pay for medically necessary care.
Download Patient Case StudiesSupport for Advocates
Our team is always happy to answer advocacy questions and help you work through the process of reaching out, meeting and following up with legislators about ELSA.
The ELSA Advocates Facebook Group is a great way to connect with fellow advocates, ask questions and share successes or challenges. Our staff moderates the group and shares advocacy updates.
Join the ConversationOur state leads are another great line of support for advocacy questions specific to your legislators. If you would like to be a state lead or want to contact the lead in your state, email Becky Abbott, co-chair of our Family-Driven Advocacy Committee.