Skin of Steel NFP

Melanoma Research and Awareness

Glenview, IL   |  https://skinofsteel.org/

Mission

To provoke revolutionary personal, behavioral, and institutional change in dealing with melanoma.

Ruling year info

2010

Executive Director

Katherine Byrnes

Main address

P.O. Box 162

Glenview, IL 60026 USA

Show more contact info

EIN

27-2111440

NTEE code info

Alliance/Advocacy Organizations (H01)

Cancer (G30)

Cancer Research (H30)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

In 2020, it is estimated that over 100,000 people will be diagnosed with invasive cutaneous melanoma and nearly one person per hour will die from the disease in the U.S. Skin of Steel aims to raise awareness about melanoma prevention and early detection as well as raise funds for melanoma research.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Melanoma Tissue Bank

1. WHY is this bank network needed?A national network of annotated fresh frozen primary melanoma tissue bank sites is the fundamental research tool that does not exist yet for public or private research. Major advances, particularly within breast and prostate Cancer, resulted from similar banks. Consequently, melanoma research lags significantly behind the progress that has been made in other cancer research.2. HOW will the bank differ from existing banks?Several individual melanoma tissue banks already exist at research institutions. Most lack "fresh frozen" samples of "primary" tumor tissue with not only preserved DNA but also RNA. Primary tissue has a distinct advantage over metastatic tissue, as it has entirely different DNA/RNA and hasnʼt been corrupted by drugs, radiation, etc., yet. Prior banks also lack the necessary network to provide a national sample pool of sufficient size, demographics and full annotation for effective research. Susceptibility, diagnostic and prognostic biomarkers for melanoma is anticipated from the research generated by the network, leading to more effective personalized diagnostics, preemptive treatment and targeted therapies.3. WHAT are the goals of the bank?To establish a national network of melanoma tissue bank sites at 5 medical research institutions across the U.S. Each site is recognized for its proven commitment to melanoma research. This network will gather 500 samples with full annotation and accompanying blood and urine samples over two years. It will yield 50,000 assays for research. Both public and private medical researchers engaged in qualified research will be able to access the repository for minimal administrative fees.4. HOW much funding does the bank need?A total of $3.3M covers the first three years of start up and maintenance. Thereafter the financial needs are minimal and can be covered by administrative fees &/or funds from multiple pharmaceutical or diagnostics firms. Such firms cannot provide the initial funds because they demand proprietary rights that would negate access by other researchers. An initial donor has already come forth in hopes that others will follow.Research on one of the most genetically complex cancers has enough laboratories. Now the right tissue specimens are needed to change the landscape of melanoma.

Population(s) Served

Skin of Steel has a junior board comprised of high school students who are working with their peers to raise awareness about melanoma and the importance of protecting your skin in the sun. As part of this, we have used a uv-sensitive camera to educate about the sun's harmful rays on our skin. We also provide free sunscreen at various outdoor events.

Population(s) Served

We use a UV-sensitive camera to educate people about the dangers of uv rays from the sun on their skin.

Population(s) Served

Where we work

Awards

Community Service Award for Health Advocacy 2012

In Touch Solutions

Peer Review Consumer Advocate 2012

Department of Defense

Community Leadership 2012

US Congressman Robert Dole

Patient Advocacy 2011

Society for Immunotherapy for Cancer

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Skin of Steel's main goal is to establish a national Melanoma Tissue Bank to collect primary melanoma tumor specimens for research. Key to supporting our local mission to develop Chicago as a center of excellence for melanoma research and treatment has been the inclusion of a Chicago medical research institution in this tissue bank. The national Melanoma TIssue Bank consortium is made up of four institutions spanning the U.S. to provide a broad demographic sampling of tissue for melanoma research. This tissue bank will provide researchers with the raw material necessary to expand the identification of biomarkers related to melanoma. This resource can lead to more effective customized treatment for melanoma patients.

Skin of Steel is raising funds with AIM at Melanoma, to establish and maintain the national Melanoma Tissue Bank. Four top medical research institutions host branches of the tissue bank. Together, the Principal Investigators from these institutions have established the necessary protocols for collecting tissue samples and data for the bank. A key expert in tissue banking has consulted on best practices for this bank. The start-up phase includes branches at the Hillman Cancer Center of the University of Pittsburgh Medical Center, Northwestern University's Robert H Lurie Comprehensive Cancer Center, Knight Cancer Center at Oregon Health and Science University, and California Pacific Medical Center. The goal is to collect 500 primary melanoma tumor specimens. They will be stored in a flash frozen state to preserve RNA which is unavailable in typical dead paraffin storage. Specimens will be fully annotated with blood and urine samples. Data collected will be widely shared among the research community through a national database. Upon Internal Review Board approval for their research, tissue will be distributed to both public and private research institutions. Lurie's participation will attract the attention of principal investigators and the pharmaceutical industry which will generate needed clinical trial opportunities in Chicago. Additionally, the Melanoma Tissue Bank partners will have expanded opportunities to do collaborative melanoma research.

We have also engaged a junior board to assist in raising awareness about sun safety especially among teenagers through events like Spyn of Steel, a fundraiser focused on engaging young people in spinning to raise funds for Skin of Steel while sharing information on sun safety.

Chicago-based Skin of Steel is partnered with AIM at Melanoma based in San Francisco and the national Melanoma Tissue Bank Consortium to drive this effort forward. AIM at Melanoma is a 501c3 dedicated to melanoma research and treatment that has worked closely with both the academic institutions and the pharmaceutical industry. AIM sponsors regional and international working groups of melanoma researchers. The Melanoma Tissue Bank Consortium is a 501c3 that will be focused on administering funding to the institutions that will be gathering the tissue samples for research.

We have engaged with a group of dedicated melanoma researchers including Dr. John Kirkwood at Hillman Cancer Center at University of Pittsburgh Medical Center, Dr. Sancy Leachman at Knight Cancer Institute at Oregon Health & Sciences University, Dr. Mohammed Kashani-Sabet at the Center for Melanoma Research and Treatment at the California Pacific Medical Center, and Dr. Jeffrey Wayne at Robert H. Lurie Comprehensive Cancer Center of Northwestern University who are working diligently through the legal and institutional challenges of developing the first ever collaborative melanoma tissue bank. With their expertise, commitment and prominence in their field, together with the dedicated fundraising efforts of Skin of Steel and AIM at Melanoma, we believe the tissue bank will be able to collect 500 specimens for collaborative research.

To date we have raised over 1/3 of the funding needed to fully establish the national Melanoma Tissue Bank. One of the biggest challenges is attracting money for infrastructure. We are committed to communicating the critical necessity of this tool in supporting melanoma research. To date, we've won grants from three foundations for $215,000, with overall donations passing $1 million. Skin of Steel has also educated the melanoma patient and family community on the role that genetics plays in melanoma. This awareness motivates those affected to donate funds in the hope that treatment will significantly advance and mitigate melanoma's impact on their children and/or grandchildren.

Financials

Skin of Steel NFP
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Operations

The people, governance practices, and partners that make the organization tick.

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Skin of Steel NFP

Board of directors
as of 07/11/2020
SOURCE: Self-reported by organization
Board chair

Stephen Sullivan

NAI Hiffman

Term: 2016 - 2019

Karen Hirsch

Kathy Kessenich

Masuo Ishida

Trip Lane

Jeanne McAtamney

Stephen Sullivan