ITSAN Past, Present and Future

Dear Friends of ITSAN,

Every now and then a family sits down and reminisces about their roots, current life and future goals. Since we all live in various parts of the world, we can only do this by internet but truly feel like we have a big online family with one thing in common and that is the ongoing suffering of so many with Red Skin Syndrome.  We would like to have a “family” talk right now, so please join us as we share our hearts, deepest concerns and vision with you.

ITSAN was co-founded three-and-a-half years ago as a labor of love, personal finances and dedication by our first beloved president, Kelly Palace. She worked hard to form a core group of grassroots volunteers and together they brought ITSAN to its current level, which includes having members in 30 countries and supporting more than 3000 people currently suffering from Red Skin Syndrome (TSA/TSW) in the ITSAN support groups which are growing at a fast pace.

Three years ago, before ITSAN existed, YouTube had two or three videos about RSS and the internet had one or two blogs about people’s experiences and their suffering, posted by a few of our early members who had seen Kelly’s original website, Now there are over 100 videos on YouTube explaining RSS, hundreds of member blogs, a strong presence on other social sites like Facebook and Twitter,  a Fox news clip of RSS, a sizable amount of media coverage, and even products being pulled from store shelves due to complaints from RSS sufferers.

A short time after ITSAN was founded, a board of directors was formed, with Kelly Palace as ITSAN’s first president. The board was made up of RSS patients and caregivers and supportive members of Kelly’s family. Based on our own experiences of suffering or seeing family members suffer, the board formed a strong bond and worked very closely together with the goal of putting forward information about RSS, supporting those currently suffering, and striving to prevent future patients from experiencing this horrendous condition. The uniqueness about the past and current ITSAN board is that they themselves or someone they care for has suffered from steroid withdrawal, and as many of us know, this kind of stress can cause burnout quickly.  There is truly a healthy demand for our unique and dedicated board to pace themselves in their volunteer work so as not to burn out.

Kelly and board member Kristina Ventura spent hours working as self-appointed ITSAN ambassadors to the National Eczema Association (NEA) and the American Academy of Dermatology (AAD). These doors were not easy to open because so little was known about Red Skin Syndrome just a few short years ago! When they first attempted to let the world know about RSS, they were literally shunned in the dermatology community. Through their repeated attempts at reaching out to the NEA, they eventually achieved acceptance of the condition and the beginning of recognition of what ITSAN is trying to accomplish. Kelly and her husband Mark spent a large amount of their own money to attend important AAD gatherings and to keep ITSAN functioning for the first 3 years.

At the beginning of 2015, after devoting 150% of their time and effort to growing baby ITSAN, Kelly and her family stepped down from their major roles on the board and left the leadership of ITSAN to our current president, JoAnne (Joey) VanDyke, along with a few dedicated, continuing board members and a few new ones. Kelly assured the remaining board members that she would always continue to support ITSAN’s work and is cheering us on with love and admiration.

As a result of the first three years of ITSAN’s work, Red Skin Syndrome and the other names often used for it are now known extensively throughout much of the eczema and skin affliction world. It is a testament to the first board’s efforts that many people now see ITSAN as a strong web presence. As a result, it is “believed” by many that ITSAN is a large, well-funded, institutionally-supported organization, possibly as large and strong as the NEA itself.

The reality is that ITSAN volunteers are a small group of dedicated people in different states with outside lives and other responsibilities.  They often grow weary with the growing demands of our one-of-a-kind nonprofit and basic maintenance funds are a struggle to pay each month.

Most of our activities, such as attending this year’s American Association of Dermatology and Coalition of Skin Diseases meetings, have again been paid for by loyal board members, out of their own pockets. Our beautiful new website was a total labor of love – planned, designed, written and executed by our board members and the incredibly generous donation of time given by a board member’s brother, who has extensive skills and his own demanding job.

If we don’t start reaching out to our members and the rest of the world for assistance, ITSAN will be unable to continue to carry out its mission and might even disappear as a non profit! Imagine a world with no more ITSAN to turn to for information and active support about what we’re going through!

We are so very thankful for those who have faithfully donated to ITSAN but we cannot put it all on a small number of supporters out of a few thousand members. The bullet list further below is a brief list of our monthly maintenance to keep ITSAN going financially today. We plan to give you more detailed information in a future newsletter about what our future goals, vision and needed funds are for our strategic plans so you will understand the specific work that we are asking you to support:

  • ITSAN currently has one paid position, the Executive Director, who is paid for 20 hours of work a week at a rate that would barely cover minimum wage if she were actually only working the agreed-upon 20 hours. The reality is that, because there is only one person currently overseeing the entire ITSAN operation, our Executive Director often ends up spending closer to 80 hours per week doing ITSAN tasks, and this is no exaggeration! Because of her complete dedication to making ITSAN run smoothly and move forward, our Executive Director often does not have time for her outside life. Her monthly pay is a bare-bones rate and we will soon be unable to pay even that if we don’t increase our incoming funds.
  • The Executive Director is currently our chief, cook, and bottle washer who ends up with the final responsibility for every project. To give a sense of the scope of duties currently required by this position, consider that, although we have forum and Facebook group moderators helping out, if any of them suddenly feel too sick to continue, the Executive Director steps in. If there is ever ANY kind of urgent task to be done or immediate crisis, the Executive Director must step in. Clearly, we have a future need for more paid staffing as well as the ability to pay our current staff member a wage that allows her to survive. A partial list of her tasks follows:
    • overseeing the ITSAN forum, social media and Facebook groups
    • overseeing the recent website-redesign project
    • handling all incoming postal mail, phone or email communications
    • managing ITSAN’s social media presence on FB, Twitter, Linkedin, etc.
    • working on press releases, newsletters, and media outreach
    • coordinating member attendance at professional conferences
    • coordinating & moderating phone conferences, board meetings, ITSAN’s annual conference and other “meetups”
    • soliciting donations and raising money for ITSAN on the forum and elsewhere
    • assisting in selecting partners and affiliates that will support ITSAN
    • updating ITSAN’s presence on Great Nonprofits and Guide Star
    • functioning as go-between with ITSAN and other skin-related organizations
    • maintaining and helping to update the ITSAN website
    • working with foreign doctors who have translated the ITSAN website into other languages
    • working with ITSAN-affiliated organizations in Japan, India, New Zealand and other countries
    • keeping other ITSAN board members up to date on all current issues

It goes without saying that we can’t afford to have a paid office space or fly board members to any central location where they can meet to make strategic decisions, etc. but it is certainly a future goal! Our current monthly operating budget is $2500 and thankfully a few more donations are coming in plus a handful of committed supporters donate on the recurring donation option offered on our website donation page, but it should not depend solely on our hardworking board and a few loyal helpers out of the many ITSAN support group members.

This is what we currently struggle to pay monthly or annually:

  • ongoing Executive Director pay
  • website hosting fees & domain name
  • legal fees
  • tax form submission
  • our paypal donation button
  • paypal handling of our donations
  • postage
  • bookkeeping quarterly services
  • nonprofit annual reporting fees
  • mailing address and forwarding service
  • Mail Chimp mailing service (this is how we send out newsletters)
  • CSD annual membership fee
  • ITSAN/CSD liaison trips

Please take a moment and ask yourself this. How much do you want Red Skin Syndrome known and recognized by the medical community?

One of the most important ways that we have begun to be taken seriously by the dermatology world and have begun to convince them that RSS is a real condition that affects many people, is by joining professional organizations and continue to attend even more of their conferences to put forth ITSAN’s message. This requires the annual CSD membership fees and the cost of sending ITSAN liaisons to the conferences.  We are now welcomed and accepted to these conferences. These growing relationships are crucial to bridging the gap between ITSAN and the medical community so our support group members see hope and progress not only for ourselves in our suffering but to prevent future RSS victims!

We we can no longer depend on board members putting out their own money to finance our participation. The following is a list of the conferences we need to be attending.

    • American Academy of Dermatology (AAD) Annual meeting held in March
    • Coalition of Skin Diseases (CSD) Annual meeting (held at the AAD Spring conference)
    • Society for Investigative Dermatology Annual Meeting held in May
    • World Congress of Dermatology Annual meeting held in June
    • AAD Summer Academy held in August
    • NOTE: Each conference is held in a different city each year and requires two knowledgeable representatives to travel to the venue and stay for approximately 3 days. Donations are needed to cover airfare, ground transportation, meals and lodging. Approximately $2000 is needed per conference for our liaisons and we would like to send them to at least three conferences per year so ITSAN becomes well-known and has a respected voice among hundreds of other skin affliction organizations who also attend these events.

To sum it all up,  we care so much about each one of you and envision a world where those who are suffering with RSS will get helpful and safe medication to ease their withdrawal process all the way to recovery, where no more children get addicted to topical steroids, where RSS is a rare occurance due to increased worldwide awareness and careful medical monitoring of steroid-prescribed patients, where there is abundantly funded research going on to understand this debilitating condition and where the medical reference manuals now list TSA/TSW/RSS as a disease.

In order to reach for this vision, ITSAN truly needs your help to maintain ongoing operations, send our liaisons to these important conferences and pursue our future goals. We will continue to make a difference in the world with your valued help. There are many options of giving offered on our donation page, so please support us and make ITSAN your favorite charity if you want to see us continue this mission. Thank you!

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