INTERNATIONAL TOPICAL STEROID AWARENESS NETWORK (ITSAN)

Topical Steroid Withdrawal Syndrome Support

aka ITSAN   |   Dacula, GA   |  www.itsan.org

Mission

ITSAN raises awareness of Topical Steroid Withdrawal Syndrome and supports all affected individuals.

Ruling year info

2012

President/CEO

Mrs. Kathryn Tullos

Main address

P.O. Box 303

Dacula, GA 30019 USA

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EIN

45-4556484

NTEE code info

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

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served

To support, comfort and encourage members enduring Topical Steroid WIthdrawal Syndrome from all over the world.

Population(s) Served

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.

Population(s) Served

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

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

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

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

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

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Community meetings/Town halls, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    The people we serve, Our board,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

INTERNATIONAL TOPICAL STEROID AWARENESS NETWORK (ITSAN)
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Operations

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

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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
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

INTERNATIONAL TOPICAL STEROID AWARENESS NETWORK (ITSAN)

Board of directors
as of 10/1/2020
SOURCE: Self-reported by organization
Board chair

Mrs. Kathryn Tullos

ITSAN non - profit - International Topical Steroid Awareness Network

Term: 2019 - 2021

Kelly Barta

Jodie Ohr

Molly Evans

Jolene MacDonald

Rochelle Richter

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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? No
  • 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

SOURCE: Self-reported; last updated 04/24/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data