Skin of Steel NFP
Melanoma Research and Awareness
To provoke revolutionary personal, behavioral, and institutional change in dealing with melanoma.
P.O. Box 162
Glenview, IL 60026 USA
Melanoma, Chicago, trials, tissue, bank
Alliance/Advocacy Organizations (H01)
Cancer Research (H30)
IRS Filing Requirement
This organization is required to file an IRS Form 990 or 990-EZ.
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What are the organization's current programs, how do they measure success, and who do the programs serve?
SOURCE: Self-reported by organization
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.
Melanoma Awareness and Sun Safety
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.
Children and youth (0-19 years)
We use a UV-sensitive camera to educate people about the dangers of uv rays from the sun on their skin.
Where we workNew!
Five powerful questions that require reflection about what really matters - results.
SOURCE: Self-reported by organization
What is the organization aiming to accomplish?
What are the organization's key strategies for making this happen?
What are the organization's capabilities for doing this?
How will they know if they are making progress?
What have and haven't they accomplished so far?
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 will host branches of the tissue bank. Together, the Principal Investigators from these institutions are currently establishing 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 three year start-up phase includes branches at the University of Pittsburgh, Northwestern's Lurie Cancer Institute, Oregon's Health and Science University Knight Cancer Center, and California Pacific Medical Center. During this phase, 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 Spyning 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 University of Pittsburgh Cancer Institute, Dr. Sancy Leachman at Oregon Health & Sciences Knight Cancer Institute, 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 that we can make this tissue bank a reality in the very near future.
It is our intention to open the branches in succession. We currently have enough funding to open the first branch at the University of Pittsburgh under the direction of Dr. John Kirkwood. Dr. Kirkwood is known as “the father of melanoma" because of his extensive research and experience treating this disease. We are awaiting legal approval from the institution followed by IRB approval. Our goal is to take the momentum from opening the bank at the first institution to raise the remaining funds needed to open the other three branches of the bank in quick succession. The key indicators of success will be:
1. the banking of 500 primary melanoma tumor tissue samples over two years;
2. establishment of a national database accessible to melanoma researchers;
3. expansion of collaborative research and the development of new more effective treatments for melanoma over the next five to ten
4. increased availability of clinical trials for melanoma in the Chicago area which currently lacks sufficient access.
To date we have raised almost 1/3 of the funding needed to fully launch the national Melanoma Tissue Bank. We anticipate that opening the initial branch will help to increase momentum for funding the full project. 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.
Skin of Steel NFP
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The people, governance practices, and partners that make the organization tick.
as of 8/4/2018
Term: 2016 - 2019
SOURCE: Self-reported by organization
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Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?
Has the board conducted a formal, written assessment of the chief executive within the past year?
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Has the board conducted a formal, written self-assessment of its performance within the past three years?