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Welcome to the Ohio Chapter Website!

We offer support groups, educational events and other resources for the scleroderma community.

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RECENT NEWS

We had a great time at the Cleveland Clinic Education Day and Gala on October 7.  To see pictures on Instagram, use #ohiosclerodermafiesta 

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Outstanding Advocacy Award 2016   Our chapter won 4 awards at the 2017 National Patient       Education Conference in Chandler, Arizona!  They were:   Patient Support, Chapter Volunteer of the Year, National   Volunteer of the Year, and Fundraiser of the Year! 

 

 

 

Save the Date for the next National Conference!    speaker patient panel

 

 

 

 

Be sure to sign up for the Ohio Chapter E-Newsletter, and Like our Facebook page for the latest happenings!

 

 

 

 

 


 

ADVOCACY

Scleroderma made it onto the list for the conditions to by studied by the 2017 Department of Defense Peer Reviewed Medical Research Program!  Now we need to work on getting on the list for 2018!  The only way to get on the list is to ask our Senators to recommend to the subcommittee that scleroderma receives research funding.  The advocacy committee will be getting letters signed at most events this year and sending them and /or hand-delivering them to our Ohio Senators, Senator Rob Portman and Senator Sherrod Brown.

The National Institutes of Health (NIH) is still forming a collaborative team regarding fibrosis, even though our Scleroderma and Fibrosis Research Enhancement Act of 2015 didn’t pass!  If this bill had passed last December, it would have mandated that they facilitate the fibrotic diseases working together and using scleroderma as a prototype disease.  They have decided they will do this voluntarily.  This is a big win for scleroderma research and could be due to all of the hard work on the part of those affiliated with the Scleroderma Foundation in finding co-sponsors for the bill across the United States.

The Ohio Chapter is working on getting a federal bill sponsored to officially designate June as Scleroderma Awareness Month throughout the whole United States.  Our lobbyists in Washington D.C. have helped us approach a potential sponsor for the bill.  Ohio Senators Portman and Brown may be co-sponsors.  We are very hopeful that it will pass unanimously very soon.

Right now, we’re waiting to introduce another scleroderma bill to congress. In the meantime, you can ask your senator to keep scleroderma on the Department of Defense list of conditions to be studied in 2018!  It’s easy.  

Action Item!  Please click here to sign a petitionGirlfriends walk Purple People Bridge
to ask your senators to keep scleroderma on the

Department of Defense Peer-Reviewed Medical
Research Program list of conditions to be studied
in 2018!


Read about Ohio's Bill 133 - We got it passed!       Capitol Building 2016

 

 

 

 

 

 


 

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Scleroderma Video with Jason Alexander

About Us

Board of Directors
 
Officers
Debbie Metz, President 
Jolene Rodenbaugh, Vice President
Jerry Metz, Secretary
George Kinstedt, Treasurer
Members-at-Large
Mariann Boyanowski
Shanelle Boyd
Gabrielle Freeman
Josette Frye
Lucille Miller
Patti Jordan
Amanda Ludolph
Kari Matsko
Consultant to the Board
Trisha Gosselin, RN

Contact Information

Scleroderma Foundation, Ohio Chapter
P.O. Box 107
Pataskala, OH 43062
Phone: 866-849-9030
Email: info@sfohio.org
Staff
Tina Fellows, Executive Director

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Look through photo galleries from previous events held by our chapter.

 

 

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Watch videos pertaining to events held by our chapter and a few fun extras.

 

 

Girlfriends walk Purple People BridgeA Twist on "Girlfriend's Weekend"

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