We have provided some materials and resources to help you advocate and prepare for meetings with your legislators.
Advocating for ELSA? Let everyone know!
Whether you are participating in Advocacy Day on Capitol Hill or contacting your legislators with our easy-to-use webtool, share your efforts on social media. Download and print our “I’m Advocating for ELSA” sign, take a photo with it and share on social media. Be sure to use the hashtags: #EnsuringLastingSmiles and #NFEDOnTheHill.
And ask them to join us!
We’ve also created a shareable business card for advocates to give to anyone who would like to join our advocacy efforts. The card includes a QR code to our easy-to-use webtool, where supporters can advocate for ELSA directly with their legislators in a matter of minutes. The card is formatted for the Avery brand business card template #5371 but can also be printed on plain paper and cut to share with your community.
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 Download ELSA FAQs & Talking Points
Document updates coming soon:
- ELSA Section by Section Summary
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
- Sample Letter 4: Parent of Child Affected by Congenital Cataracts
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.
Tagging Legislators on Social Media
Using social media is a great way to share your story to inspire your friends and families to advocate for ELSA, as well as letting your legislators know how important the bill is to you, your loved ones and/or your patients. Use the button below to access a sortable list of all legislators by state. The list includes links to your legislators’ websites and Facebook and Twitter accounts.
Legislators want to hear from their constituents, so be sure to tag ONLY your legislators and use the hashtag #EnsuringLastingSmiles when posting to social media about ELSA.
How to tag your legislator by social media platform
On Facebook, begin typing the @ symbol directly followed by the legislator’s name as it appears on their official profile in your post (ex: @SenatorTammyBaldwin). You should see a list of possible pages/people to tag pop-up. Select the correct profile from the list by clicking on it, and continue typing your post.
On Instagram, for a new post tap “Tag people” in the final screen before sharing your post. Tap the photo anywhere to open the search field. Begin typing in the legislator’s name in the search field and select the correct profile from the available options.118th Congress Social Media List
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 Studies
Support for Advocates
We are thankful for all of our ELSA advocates, including the 70+ supporting organizations who have joined us. 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 Conversation
Our 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.