INTERNATIONAL TOPICAL STEROID AWARENESS NETWORK (ITSAN)
Topical Steroid Withdrawal Syndrome Support
Mission
ITSAN raises awareness of Topical Steroid Withdrawal Syndrome and supports all affected individuals.
Ruling year
2012
President/CEO
Mrs. Kathryn Tullos
Main address
P.O. Box 303
Dacula, GA 30019 USA
EIN
45-4556484
NTEE code
Diseases, Disorders, Medical Disciplines N.E.C. (G99)
Alliance/Advocacy Organizations (E01)
Health - General and Rehabilitative N.E.C. (E99)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
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Communication
Programs and results
What we aim to solve
The problem we are working to address is the lack understanding and awareness of an emerging diagnosis affecting thousands - Topical Steroid Withdrawal Syndrome. ITSAN exists to be a resource for patients, caregivers and healthcare providers. It is our goal that this condition may some day be prevented entirely. Until then, we hope to connect sufferers with knowledgeable doctors who can accurately diagnose and properly treat this condition. Another problem ITSAN aims to address is the lack of complete labeling on the drug inserts for topical corticosteroids, alerting users to the potential for developing TSW Syndrome (also known as Topical Steroid Addiction or Red Skin Syndrome).
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Update and maintain ITSAN.org website
ITSAN.org is a comprehensive, one-of-a-kind website for people suffering with Topical Steroid Withdrawal Syndrome. The website provides information, resources, and encouragement to a population of sufferers with nowhere else to turn. It also provides information for doctors seeking to understand this little-known syndrome. The website is built in Wordpress and needs to be modernized. It also needs localization services so that non-English speakers globally can find the site as well.
ITSAN Support Groups
To support, comfort and encourage members enduring Topical Steroid WIthdrawal Syndrome from all over the world.
ITSAN Advocacy
ITSAN Advoacy works to build bridges with the medical community so that the causes and treatment of topical steroid addiction can be understood. We attend dermatologist / Coalition of Skin Disease conferences and we want to build an education program that would provide CME credits to physicians to learn of the multiple negative outcomes of steroid use.
Patient Registry
ITSAN has recently joined NORD and is currently working with this organization to develop a patient registry to track symptoms, patterns and methods of healing, and prevalence of TSW. We hope to collect information over years to gather data points to learn more about the disease process and to attract researchers.
Where we work
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Total number of organization members
This metric is no longer tracked.Totals By Year
Related Program
ITSAN Support Groups
Type of Metric
Context - describing the issue we work on
Direction of Success
Increasing
Our Sustainable Development Goals
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Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
1. To provide support and resources to those who are suffering from Topical Steroid Withdrawal Syndrome.
2. To build bridges with the medical community so that the serious side effects of topical steroids can be studied, understood, publicized, and prevented.
3. Petitioning the FDA and pharmaceutical companies to add Topical Steroid Withdrawal Syndrome as a possible adverse affect
What are the organization's key strategies for making this happen?
1. Provide an accessible, interactive, and user-friendly website offering resources and strategies for preventing topical steroid addiction and dealing with Topical Steroid withdrawal.
2. Work with media to cover stories of Topical Steroid Withdrawal.
3. Reach out to internet and community organizations that assist patients with "chronic" skin conditions.
4. Create Continuing Medical Education (CME) to strengthen understanding of appropriate guidelines for topical steroid usage.
5. Communicate with elected officials to create legislation for labeling changes.
6. Encourage our members to report side effects and adverse events to the FDA
7. Provide a forum for members to connect
8. Create a patient registry
9. Connect patients with knowledgeable doctors
What are the organization's capabilities for doing this?
Every member of the ITSAN volunteer community has first-hand experience with topical steroid addiction and withdrawal. We are effective because we understand the stakes and feel a passion towards the cause of relieving suffering of Topical Steroid Withdrawal Syndrome patients.
The Board of Directors of ITSAN consists of a core group of volunteers who administer the website, moderate the interactive forums, write and disseminate a bi-monthly newsletter, and oversee advocacy efforts.
Annual fundraisers bring revenue into the organization. In-kind donations from volunteers hours average $100,000 per year. Sponsorship from small companies have also contribute to the annual budget. A Children's book about Topical Steroid Addiction and Withdrawal was published as a fundraiser in 2013.
ITSAN has interaction with medical professionals that support our mission and are dedicated to increasing raising awareness and understanding within the medical community.
Partnering with other patient advocacy groups to host the first eczema related Patient-focused Drug Development meeting with the FDA "More Than Skin Deep"
Providing webinars for our members to support and educate
Encouraging membership to report all side effects and adverse events to the FDA
What have they accomplished so far and what's next?
Thousands of members in the forum and online groups
100+ internet sites, blogs, social media sites “spin-offs"
Regular Webinars with our membership
First International Teleconference
Currently 35 countries globally part of our Network
Meet-ups in LA, NYC, Chicago, London, Northern UK, Malaysia, Singapore, Australia
Translation of ITSAN website into Japanese
Japan invited ITSAN to attend it National Conference on Topical Steroid Addiction
Release of 'Taming the Scratchy Monster' Book
Membership in an ever-increasing array of dermatological and other medical organizations
Advocacy in legislation that affects our patient population
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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Who are the people you serve with your mission?
We serve people with skin disease or issues that required them to use Topical Steroids to treat, and suffered from an iatrogenic condition caused by the treatment -- Topical Steroid Withdrawal Syndrome (TSWS). We also serve caregivers - of both adults and children, as well as their friends, family, and others in the patient's support network. In addition, we support healthcare providers who are still learning about the emerging diagnosis of TSWS.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve
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What significant change resulted from feedback?
We received feedback that people in our community do not always know what is being done behind the scenes at ITSAN to raise awareness, make change, and advocate on their behalf. They often feel disconnected. We added more social media channels, posted more often, added a blog and News section on our website, as well a regular Newsletter sent via email and posted on our website. We also created a support group that meets monthly for anyone who just needs to talk, wants to ask questions, and wants to hear ITSAN updates on projects and initiatives from the board and other volunteers.
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive
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What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
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INTERNATIONAL TOPICAL STEROID AWARENESS NETWORK (ITSAN)
Board of directorsas of 09/30/2022
Mrs. Kathryn Tullos
ITSAN non - profit - International Topical Steroid Awareness Network
Term: 2019 - 2021
Kelly Barta
Jodie Ohr
Janelle Harris
Jolene MacDonald
Michelle Li
Natalie Lawton
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
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? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 09/06/2022GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
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