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Welcome to Evamarie Cole's Stepping Out to Cure Scleroderma Page!

2026 Stepping Out - Long Island, NY

Thank you for visiting my personal fundraising page to support this Stepping Out to Cure Scleroderma event!

Over the years your support for the mission of National Scleroderma Foundation to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families, and support networks has been amazing.  I am once again asking for your support.  To make a donation, simply click “Sponsor” and complete the form.

I truly appreciate your generosity and encouragement. 

Please consider sharing this page with friends and family who might also want to make a difference.

Together, we can raise awareness, support those living with scleroderma, and bring us one step closer to finding a cure.

Please Help Me
Reach My Goal

Raised

$2,456

My Goal

$2,000

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My Achievements

Set Up Fundraising Page

Raised $250

Raised $500

Raised $1,000

Raised $5,000

Raised $10,000

Updated Profile Pic

Added a Blog Post

Received 5 Donations

Reached Fundraising Goal

Increased Fundraising Goal

My Updates

Your Beacon of Hope on Capitol Hill

Tuesday 9th Jun
Recently I went  to Washington, DC to meet with legislative officials on Capitol Hill. This was my third year joining forces with the Coalition of Skin Diseases, and I’m always humbled and honored to participate. This year, I even had the privilege of serving as the NYS Lead.

I often reflect on when I was first diagnosed with Scleroderma — a rare disease I couldn’t even pronounce or spell at the time. I was unsure if I would live past the six-year life expectancy I was given by a doctor. I won’t lie: those first three years were some of the most difficult of my life. But volunteering with the National Scleroderma Foundation gave me hope — through education, support, and the relationships I built with others living with scleroderma. What once felt like pain slowly became purpose.

My favorite way to serve the Foundation, the community, and myself is through advocacy. Advocacy for scleroderma is in my blood — quite literally. My work revolves around closing the gap between lived experience and policymaking, while fighting for better research, earlier diagnoses, equitable access to care, and more affordable treatments that ultimately improve patients’ lives.

Too many people living with scleroderma face delayed diagnoses, limited treatment options, financial burdens, and a lack of awareness surrounding this complex disease. That’s why advocacy matters. Every conversation with lawmakers is an opportunity to push for increased federal research funding, stronger patient protections, expanded access to specialists and therapies, and a future where no patient feels invisible or unheard.

I’m deeply thankful for organizations like the National Scleroderma Foundation, Coalition of Skin Diseases and for everyone who continues to support and empower patients to use their voices, share their stories, and remind the world that our experiences matter. #scleroderma #sclerodermaawareness #advocacy #advocacymatters #AdvocacyInAction

Thank you to my Sponsors

$420

Jon-paul Dimauro

Always wishing you and the family the best!

$263.75

Cathy Stanton

$250

Pat Mckevitt

$250

Christina Gilbes

$200

Nan Doherim

$160

Evamarie Cole

$107.82

Claudia & Pete Mcnally

Go Eva and team! Let’s find this cure!! 🩵

$107.82

Magda Podlipny

Love you cuz.

$100

Doreen Giaquinto

$100

Avram Zev Goldberg

Great work!

$61.01

Kevin & Tricia Mcnally

$55.66

Alda Gilbes

$55.66

Ilyse Damico

Love ya

$55.66

Lida Running Crane

$55.66

Donna Waitkus

You are an inspiration!

$50

Micaela Podlipny

$33.65

Tiese Mahabir

You rock shorty!! 🩵

$28.43

Leonor

🥰😘😍❤️💕

$28.43

Team Kiyanna 🌹

Congratulations on another walk down!!! You always inspire me! Thank you for all you do!!! WE SEE YOU 🩷🩷🩷🩷🩷🩷🩷

$27.88

Phyllis Ravens

Thanks for all you do 🩵

$25

Shelly Somwaru

$20

Tommy Lesner

Our Team