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Ohio Chapter News

Vice President!
 
We have just elected a Vice President at our last Board meeting!  Her name is Debbie Haussler and she has been a board member since January 2020.  Watch for more info in our newsletter and e-newsletter!  
 
Current Ohio Advocacy Initiative (update as of September 3, 2020):

Thank you Represenative Randi Clites and Representative Tim Ginter for sponsoring #OhioHB412, which is a bill to create an Ohio Rare Disease Council! #OHRareDiseaseCouncil #rarediseases. The Scleroderma Foundation Ohio Chapter is proud to support this bill. We're hoping it passes unanimously!  The Ohio House of Representatives Health, Human Services and Medicaid Committee just had their 3rd hearing on HB 412 – Creation of the Ohio Rare Disease Advisory Council. There were no opponent testimonies given. We will stay tuned for when the bill will be heard again and/or voted out of committee.

Current Federal Advocacy Initiatives:

In August 2020, we've had several meetings with U.S. Senators and Representatives regarding the need for our co-sponsorship of our bill during Capitol Hill Day. This bipartisan and budget-neutral bill which would establish a commission to improve coordination of National Institutes of Health (NIH)-supported research related to scleroderma and other fibrotic diseases. The name of the legislation is the National Commission on Scleroderma and Fibrotic Diseases Act of 2019. 

There’s an easy way for YOU to help advocate for scleroderma.  Please sign and return the advocacy letter asking your member of Congress to co-sponsor our bill! All advocacy letters are hand-delivered to members’ offices on Capitol Hill.   Scan and email your advocacy letter to advocacy@scleroderma.org. That’s the fastest way to get your letter to Capitol Hill. You may also mail it to the following address: Scleroderma Foundation, Attn: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA 01923. Thank you!