Stepping Out to Cure Scleroderma - Rochester

Forever Friends


It's 2019, time to step out again. Each year our sister, Rosa Johnson reached out to her family and friends requesting their support in helping to advance scleroderma awareness through community events, and fundraising. Your donations have helped to address our three-fold mission of education, support, and research.

Rosa’s family has volunteered to continue her legacy by taking up torch to lead the Rochester “Stepping Out to Cure Scleroderma” walk.

We will be lacing up our shoes on Saturday, June 1, 2019, at 9:00 AM, to participate in this annual fundraising event which will be held at Seneca Park, Rochester, NY. We will gather at the Seneca Park-Longhouse Shelter. The walk begins at 10 am.

If you’re able to participate as a walker, but would still like to support our team, the organization and their efforts, please make a "DONATION!”

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support our fundraising efforts.

You may send a check or money order directly to SF Tri State Inc. Chapter, 59 Front Street, Binghamton, NY 13905. Memo: Rochester Walk/Forever Friends

All contributions go to the Scleroderma Foundation/Tri-State Chapter to help find a cure and support those whose lives have been affected by scleroderma.

If you would like to find out more about scleroderma and the Foundation, please visit

Since 2004, the Rochester community has helped to raise over $300,000.

We’re currently working with medical professionals to inform them about this rare disease, convey the importance of research within the medical community, and the need to identify ways to better assist those suffering with this illness.

Patients still face an uphill battle against this relentless disease. However, the message of hope still resonates amongst our members through remarkable people like Rosa.

She has been added to a prestigious list called “Remarkable Rochesterians” under the Health category. Rosa became a tireless advocate for people with the illness, raising awareness, as well as hundreds of thousands of dollars for research.

Trials are ongoing however, we need government funding to continue Research Programs.

The estimated economic impact of scleroderma in the United States is $1.5 billion annually and the direct cost of treatment for patients is more than $460 million annually.

It’s our goal to continue promoting awareness and raising funds until a cure is found.

We’re asking our supporters to join the challenge we’ve established for 2019 which is $2K. We’re also requesting your assistance to help influence public policy.

It’s well known the government listens and/or pays attention when there are large numbers. We are continually sending signatures to Congress for Scleroderma Research and Awareness Act to be passed for funding towards research. We know it takes many VOICES.

Please consider adding your voice.

Many thanks for your support -- and don't forget to forward this website to anyone who you think might want to make a donation to the cause.

May God continue to BLESS YOU for your spirit of GIVING!
Sending hugs and smiles!

The Family of Rosa Johnson

(Team Captains)

Marilyn Sibley & Linda Lehtonen Pratt
Rosa Johnson (Our guardian angel)

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