RARESUPERMAN1

#RareDisease #EctodermalDysplasias Advocate asking legislators to cosponsor #EnsuringLastingSmilesAct for coverage of #congenitalanomalies #MilwaukeeBucks Fan

[RARESUPERMAN1 @AAbbott77940320]

Thank you @SenatorBaldwin for your friendship, support and leadership from the start! The #EnsuringLastingSmiles Act will be life-changing for kids & individuals like me born with congenital anomalies. Let’s get ELSA passed this Congress!

[Sen. Tammy Baldwin @SenatorBaldwin]

Aidan has been my friend, inspiration, and partner to pass the #EnsuringLastingSmiles Act. He is an everyday hero and is what my bipartisan legislation is all about. https://t.co/kjLS71Gd0s

[RARESUPERMAN1 @AAbbott77940320]

Thank you @NewsNatalie & @CBS58 for sharing my story and my mission to get the #EnsuringLastingSmiles Act passed so kids born with congenital anomalies can receive the medically necessary treatments they need and deserve. I appreciate it! #ectodermaldysplasias #rarediseases #ELSA

[Natalie Shepherd @NewsNatalie]

Natalie’s Everyday Heroes: Aidan Abbott is your typical teen with an after-school job. But this 17-year-old from Slinger is also already focused on his life’s mission. He’s lobbying politicians to close insurance loopholes to help kids with rare health issues. @NFED_ORG @CBS58

[RARESUPERMAN1 @AAbbott77940320]

Roses are red,
Violets are blue,
It’s time for ELSA to be passed,
So those with congenital anomalies can receive medically necessary treatments too!
#EnsuringLastingSmiles #PatientAdvocacy #RareDiseases #EctodermalDysplasias

[Kevin Koser @Kosers4ELSA]

Cheers to progress! It’s my hope and dream that “politics” (read: infighting, bickering, etc.) please stay as far away as possible from this STRONG bipartisan bill—304 House cosponsors—and successfully passes the House, then the Senate, and then to POTUS! #EnsuringLastingSmiles

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

@MikeCrapo, we are asking you to co-sponsor the #EnsuringLastingSmiles Act (HR.1916/S.754). This bipartisan legislation will ensure our loved ones born with congenital anomalies will receive medically necessary treatments. Our family is counting on you!

[RARESUPERMAN1 @AAbbott77940320]

It’s December & the best gift would be getting the #EnsuringLastingSmiles Act passed! Thankyou @SenatorBaldwin for continuing to fight for insurance coverage for the medically necessary repair of congenital anomalies! #LetsGetELSAPassedinthe117th #RareDisease #EctodermalDysplasia

[Sen. Tammy Baldwin @SenatorBaldwin]

My work is inspired by Aidan from Slinger, WI, who was born with ectodermal dysplasia and needed intense oral care from an early age, but his family’s insurance company refused to pay for it. Thanks to Aidan & @NFED_ORG, we’re working to ensure kids like Aidan are covered.

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

@MartinHeinrich, thank you for co-sponsoring the Ensuring Lasting Smiles Act in the 116th Congress. Would you co-sponsor in the 117th Congress, please? We are counting on your support!

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

@SenSanders, Thank you for co-sponsoring the Ensuring Lasting Smiles Act in the 116th Congress. Would you co-sponsor in the 117th Congress, please? We are counting on your support! #EnsuringLastingSmiles

[RARESUPERMAN1 @AAbbott77940320]

I hope to see all social media platforms flooded with this sign! Please post this sign today with the hashtag #EnsuringLastingSmiles. Let’s get this hashtag trending.
Click here to learn more about ELSA: https://t.co/HJrUHB0IAt

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Show Your Sign: November 13th
We appreciate you advocating for the Ensuring Lasting Smiles Act. We are asking you to post the sign below on your social media platforms on November 13th to raise awareness for ELSA and use #EnsuringLastingSmiles. Let's get this hashtag trending!

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

@ChrisCoons, we are asking you to co-sponsor the #EnsuringLastingSmiles Act (HR.1916/S.754). This bipartisan legislation will ensure our loved ones born with congenital anomalies will receive medically necessary treatments. Our family is counting on you!

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

@SenatorHick, we are asking you to co-sponsor the #EnsuringLastingSmiles Act (HR.1916/S.754). This bipartisan legislation will ensure our loved ones born with congenital anomalies will receive medically necessary treatments. Our family is counting on you!

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

@SenFeinstein, we are asking you to co-sponsor the #EnsuringLastingSmiles Act (HR.1916/S.754). This bipartisan legislation will ensure our loved ones born with congenital anomalies will receive medically necessary treatments. Our family is counting on you!

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

@SenTomCotton, we are asking you to co-sponsor the #EnsuringLastingSmiles Act (HR.1916/S.754). This bipartisan legislation will ensure our loved ones born with congenital anomalies will receive medically necessary treatments. Our family is counting on you!

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

@TTuberville, we are asking you to co-sponsor the #EnsuringLastingSmiles Act (HR.1916/S.754). This bipartisan legislation will ensure our loved ones born with congenital anomalies will receive medically necessary treatments. Our family is counting on you!

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

@SenShelby, we are asking you to co-sponsor the #EnsuringLastingSmiles Act (HR.1916/S.754). This bipartisan legislation will ensure our loved ones born with congenital anomalies will receive medically necessary treatments. Our family is counting on your support!

[Smile Train @Smiletrain]

Great to see this commitment to #disabilityinclusion from @WhiteHouse!

Policies like these & the recently re-introduced #EnsuringLastingSmilesAct (ELSA) are essential to advance equity & #BuildBackBetter.

@SenatorBaldwin @RepDrewFerguson @RepAnnaEshoo @SenJoniErnst @NFED_ORG

[RARESUPERMAN1 @AAbbott77940320]

If you believe people born with #congenitalanomalies deserve medical coverage for #medicallynecessary treatments, contact your legislators & ask them to cosponsor the #EnsuringLastingSmiles Act HR.1916/S.754. I need all parents, patient advocates, doctors, teachers to email NOW!

[RARESUPERMAN1 @AAbbott77940320]

Thankyou @SenatorBaldwin for meeting with #Wisconsin advocates on #NFEDdayontheHill2021. Thankyou for being lead on the #EnsuringLastingSmiles Act. Lets do all we can to get #ELSA passed so all born with #congenitalanomalies receive the #medicallynecessary treatments they need.

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Thank you, @SenatorBaldwin for being our champion for the #EnsuringLastingSmiles Act and for being a part of our NFED Virtual Advocacy Day! #NFEDOnTheHill2021 https://t.co/1J2R6prXEt

[RARESUPERMAN1 @AAbbott77940320]

Thank you @SenatorBaldwin for listening taking action & working with your colleagues to move the #EnsuringLastingSmiles Act forward in Congress. Let’s get ELSA to the finish line so every child born with a #congentialanomaly gets the medically necessary treatments they need.

[Sen. Tammy Baldwin @SenatorBaldwin]

My work is inspired by Aidan from Slinger, WI, who was born with ectodermal dysplasia and needed intense oral care from an early age, but his family’s insurance company refused to pay for it. Thanks to Aidan & @NFED_ORG, we’re working to ensure kids like Aidan are covered.