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Advocacy Updates

  1. CALL TO ACTION FOR H.R. 3446 & S. 2477 

READ H.R. 3446 and FOLLOW its progress.
READ S. 2477 and FOLLOW its progress.

H.R. 3446 and S. 2477 are identical bills in the U.S. House of Representatives and U.S. Senate, titled the National Commission on Scleroderma and Fibrotic Diseases Act of 2019. In the House, it was introduced by Rep. Peter T. King (R-NY-2). In the Senate, it was introduced by Sen. Kirsten Gillibrand (D-NY). Both bills are bipartisan and budget neutral. If passed by Congress, they would establish a commission to improve coordination of research already funded by the National Institutes of Health (NIH) related to scleroderma and other fibrotic diseases.

Make Your Voice Heard

Download and sign both letters to your U.S. Rep. and to your U.S. Senators asking them to co-sponsor the bill.

• DOWNLOAD advocacy letter for H.R. 3446

• DOWNLOAD advocacy letter for S. 2477

All advocacy letters will be hand delivered to members’ offices on Capitol Hill.

The fastest way to get your signed advocacy letter to Capitol Hill is to scan it and email it to advocacy@scleroderma.org.
You may also mail it to the following address:

Scleroderma Foundation
ATTN: Advocacy
300 Rosewood Drive, Suite 105
Danvers, MA 01923-1389

 To review or help with advocacy efforts, please visit www.scleroderma.org/advocacy and sign up for alerts or contact Jacob Davila at jdavila@scleroderma.org.  


Congratulations Jacob Davila, National Advocate of the Year !

2019 National Advocate Jacob Davila

Join us in congratulating Jacob Davila, Texas Bluebonnet Chapter board member and scleroderma warrior, National Advocate of the Year was recognized as the 2019 National Advocate of the Year. Jacob personifies what it means to “speak up for scleroderma.” You can hear his voice on the steps of the Texas state capitol and in the halls of Capitol Hill in Washington, D.C. For several years, Jacob has been active in awareness and advocacy in many ways. He regularly works with the Foundation’s National Office to ensure advocacy connects with chapter events, social media, and fundraisers. He also does an outstanding job interacting with young adults and bringing people together through social media. Jacob never misses an advocacy committee meeting, and he’s the lead volunteer in the advocacy booth at the National Conference. He may be quiet, but he roars a resounding message to Speak Up for Scleroderma at every opportunity. Congratulations, Jacob!  www.scleroderma.org/awards






Capitol Hill Day 2018 Steps

For more information on becoming an advocate here in Texas, please contact our chapter:

Chapter Contact: Jacob Davila, Advocacy Chair
Email:  JDavila@scleroderma.org

Scleroderma Foundation, Texas Chapter
110 Cypress Station Dr.  Suite 117
Houston, TX  77090
Phone: 281-880-4992
Fax: 281-880-4996

Email: TXchapter@scleroderma.org