Hello ITSAN Family and Friends,

It’s been a very busy past two months, full of networking, advocating, and strategizing for the future of ITSAN and our members! 

Here are some highlights:

International Alliance of Dermatology Patient Organizations (IADPO) Membership

Earlier this year we were contacted by a few of our active International Members who are having difficulty breaking into the Medical Community in their countries.  We began to make inquiries on how we could help open more doors for all of you in places like Australia, Asia, South America, and the UK and one of the organizations we were directed to was the IADPO.  After going through the application process, we are happy to announce that ITSAN has been accepted and is now a proud member of the IADPO!  With Board of Directors who include individuals such as Cheryl Talent, President of the Eczema Association of Australasia Inc., the hope is that our involvement will create more awareness and receptivity to TSW in those organizations and countries represented.

 

Eczema Expo – Chicago in June

ITSAN Mission Alignment – Building Bridges with leadership in the Eczema Community and Medical Professionals, TSW Awareness and Patient Support.

Julie Block, president of NEA and me at the Eczema Expo

Why This Event?  If we are to move forward with our objectives of finding answers to the mechanisms of and better treatments for TSW, along with raising awareness, we must build relationships with those in the medical field and who represent the eczema population on a large scale.  This event had in attendance all of those who are on the forefront of eczema research, treatment, and education.

Personal Thoughts –  I had the opportunity to attend and speak about advocacy at the Expo put on by the National Eczema Association (NEA). What a special weekend spent with nearly 400 Eczema Warriors, Dermatologists, Researchers, and Exhibitors.  We even fit in a TSW meet-up!  NEA did such a wonderful job of creating an environment where the sense of community was palpable and those who attended were inspired, educated, and truly cared for.  I especially loved how celebrated the children were.  Those of us who have suffered with eczema since childhood know how challenging it is to live with this condition – not only physically, but  psychologically as well.  One of my favorite moments was when a few of the kids trickled down from their movie night upstairs to where the adults were hanging out for a dinner party and danced their little hearts out on the dance floor!  Seeing the 20 something’s come around these kids and break it down together with them was just magnanimous; it left my heart with the biggest smile.

ITSAN Impact – We heard from a wide variety of specialists that weekend ranging from a Sleep Therapist, Allergist, Family Therapist, renown Pediatric Dermatologists, Clinical Researchers, Alternative Practitioners, even Dr. Aron.  And although we don’t all agree on methods of treatment and diagnoses, it was important to come together as those who ultimately have the same goal in mind, to alleviate suffering and to find answers to this complicated condition.  It’s absolutely paramount to continue to dialogue; to tell our stories, to listen, to learn from each other. Together we can make huge strides forward in gaining the upper hand on eczema and TSW.  This requires patience, openness, and a spirit of collaboration. 

 

American Academy of Dermatology’s Legislative Conference – Washington D.C. in July

ITSAN Mission AlignmentTSW Awareness among the physician community and legislators, developmental training for our organization.

With Rep. Woodall, Dr. Alex Gross, and Dr. Maxim Polansky on Capitol Hill

Why This Event?  This is 4 days for us to meet with and learn from fellow skin disease non-profits.  Also, it gives us the ability to speak with hundreds of dermatologists about what long-term topical steroid use has done to our population.  We spent a day in developmental training with the Coalition of Skin Disease and another day hosted by the American Academy of Dermatology preparing us for our day on Capitol Hill.  All in all, Jodie and I were able to meet with and tell our stories to 13 different Congressmen/women!  

ITSAN is able to attend this conference every year because we are a member of the Coalition of Skin Diseases (CSD), under the American Academy of Dermatology (AAD), who funded the event.  The AAD covers our expenses to attend this conference because we, as Patient Advocates, lend to the emotional aspect of their legislative asks. We make it real, so to speak, when we explain to legislators the burden of skin disease, and how issues like prior-authorization affect people like us.  This is a great opportunity for us to tell our TSW stories, so it is always a win-win. 

ITSAN Impact (HUGE!):

  • Coalition of Skin Disease Staff and Patient Advocates in DC

    I was encouraged to consider sitting on the CSD’s board of directors, giving ITSAN access to very key industry contacts

  • Meetings with our members of Congress on Capitol Hill, driving awareness of the needs of our community
  • I was invited into a meeting by the VP of NEA and the Alliance for Patient Access with LEO Pharmaceuticals about working on Step Therapy Laws on the State and Federal Level
  • Valuable consultation with another attendee, Jean Pickford, on running a non-profit such as ITSAN
  • Relationships with key legislators and physician contacts were made
  • Relationships with peers in skin-related organizations were developed
  • Key contacts in the Dermatology Nurses Association will open the door for further ITSAN involvement in the future

BONUS:  

With Jean and Jodie at the AAD’s Legislative Conference

Before the conference even began, Jodie and I met with Jean Pickford from Pickpoint LLC, a consulting company for non-profits about next steps for ITSAN.  We spent 2 very productive hours hashing out top priorities and a strategic plan, all spread out in her hotel room.  Jean is so passionate, and after hearing our story and researching TSW through the website, she is on board with helping us accomplish our mission.  We came away with a clear plan for this next year and are really excited to get to work.  

 

What’s ahead?

ITSAN Member Registry

You – our membership  – is our biggest asset when we go to speak with researchers and doctors.  There is strength in numbers.  Right now, we have those numbers in Facebook groups, but we need to develop a true ITSAN membership base. We all want more support from the medical community, we all want better care, RELIEF!, and more answers. And we definitely want this to be prevented in the countless others who are being prescribed topical steroids improperly as we speak.  The first step in accomplishing these things is to create a way on the ITSAN site for people to register as members.  This is in development and we’re shooting for it to be up and running by November. 

ITSAN Community Support  – Webinar Series

We also want to develop more resources that will benefit our community, which include webinar series on topics such as “Emotional Wellness”, “Tips for Coping with TSW”, “Care for Care-givers”, etc.  We’re planning on beginning a series the first of September partnering with two TSW members, Christene Lozano and Christie Cotcher, who also happen to be a licensed Family Therapists.   Really looking forward to that!  Have a topic you’d like to host or have covered?  Let me know!

ITSAN Community Support  – TSW Conferences

Another way we want to provide support is by hosting one day conferences.  These would be something between a local TSW meet-up and a typical conference.   They would be casual and more cost effective but would also have the addition of several speakers along with the opportunity to connect with others going through TSW and their Care-Givers.  The plan is to host our first one-day conference here in Atlanta November 3rd, with regional conferences to come in 2019. Stay posted for more details!

How YOU can get involved:

The few of us who represent the inner-core of ITSAN have a lot of passion, drive and determination to fight for this cause and for you, but without the financial involvement of our members (YOU!!!), we will not be able to get the job done.  It costs money to buy software for webinars and fly in speakers for conferences, for p.o. boxes, and web maintenance, and a host of other operational costs.

ITSAN is the only entity that is fighting on the behalf of the TSW community by promoting research, connecting with medical professionals, and developing ways to support those affected by RSS/TSW, but WE ABSOLUTELY NEED YOU to help us make it happen.  ITSAN is completely funded by individuals like yourself. Currently we have a little over $500 in the bank which doesn’t get us very far this year!  Please consider getting involved in this very important work by signing up for a recurring donation, running a fundraiser, or making a significant one-time gift today. 

Together we can end this and save countless others from the suffering we have endured!

Wishing you all the Best,

Kelly

 

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