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Current Ohio Advocacy Initiative (Bill introduced November 13, 2019):

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!

Plans for 2020 Ohio Advocacy Day

Tentatively, we’re planning to hold a rally in Columbus on June 12, 2020.  Anyone can participate for free!  We will meet with representatives, hear from a couple of speakers at the Ohio Statehouse lawn, have lunch and then raise awareness and funds through the 2nd Annual Columbus Stepping Out for a Cure walk in Downtown Columbus.

Current Federal Advocacy Initiatives:

On September 17, 2019, Tina Fellows, Executive Director; Josette Frye, Board Member and Event Leader; Demeshia Montgomery, Board Member and Advocacy Committee Chair, and Carmella Anderson, Education Day Committee, visited key representatives to explain the need for our recently-introduced 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 goal for the journey was to gain as many co-sponsors of the bill as possible.  We now have 28 co-sponsors. There’s an easy way 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!