SECOND QUARTER 2022 NEWSLETTER
Hello TSW Community!
We are excited to update you about our recent work, and Topical Steroid Withdrawal Syndrome recognition at patient conferences, and in the medical literature. We see you, we hear you, and we are fighting for you every day! We believe in the right for every person impacted by this preventable condition to an accurate diagnosis and appropriate, supportive care. With 15k members in ITSAN’s private Facebook Support Group, we know the desperate, growing need. Join us, as we share TSW patient and caregiver resources, and about ITSAN’s recent advocacy work. We are fighting to end TSW Syndrome and we need your help. It is critical that we remain funded to continue to raise TSW awareness and to advocate for change. You can support ITSAN here.
PRESS RELEASE: ITSAN to Develop a Topical Steroid Withdrawal Syndrome Patient Registry
ITSAN has partnered with the National Organization for Rare Disorders (NORD) to build a registry to research TSW Syndrome! This study, designed by researchers, medical experts and patients, will provide an opportunity for patients and caregivers around the world to share information about their experience with TSW Syndrome. Information from this global resource will be used to establish prevalence, advance research, develop a diagnostic profile and improve patient care. We anticipate the launch of the TSW Syndrome Patient Registry in early 2023. Support our patient registry work! Donate here. Read ITSAN’s Patient Registry Press Release here.
ADVOCACY & EDUCATION
ITSAN has been busy representing at medical conferences and raising TSW awareness!
MARCH: ITSAN BOARD RETREAT
The ITSAN Executive Board met in Myrtle Beach, South Carolina in March to work on strategic planning for 2022. Learn more here.
Left: Kelly Barta, Executive Board and former President, Kathryn Tullos, President & CEO, Janelle Harris, Executive Board, Jodie Ohr, Treasurer/Executive Board, Natalie Lawton, Executive Board, Michelle Li, Executive Board.
APRIL: AMERICAN ACADEMY OF DERMATOLOGY ANNUAL MEETING
ITSAN represented the TSW community at the American Academy of Dermatology’s Annual Meeting where TSW Syndrome and ITSAN were both mentioned by Dr. Eric Simpson. Learn more here.
Left: Kathryn Tullos, ITSAN President, Michelle Li, ITSAN Board Member & Kelly Barta, President of the Coalition of Skin Diseases, ITSAN Board Member & former ITSAN President, representing at the AADA’s annual meeting in Boston, Massachusetts in April. Right: Michelle and Kathryn at ITSAN’s booth alongside friends at the Coalition of Skin Diseases.
MAY: SKIN ON FIRE PANEL DISCUSSION
Kathryn Tullos, ITSAN President, joined a panel discussion about Skin on Fire, a documentary short film about Topical Steroid Addiction (TSA) and Topical Steroid Withdrawal Syndrome (TSWS). The virtual panel was hosted by PCH Films. Watch here.
Top left: Emily Barth Isler, Moderator, Journalist, Marvin Rapaport, MD – Dermatologist & TSW expert; featured in film, Peter Lio, MD – Dermatologist; member of National Eczema Association Scientific & Medical Advisory Council, Kathryn Tullos, ITSAN President & CEO, Lauren Du Pree – TSW patient; featured in film, James Keach – Filmmaker, Skin on Fire.
MAY: SOCIETY FOR INVESTIGATIVE DERMATOLOGY ANNUAL CONFERENCE
Kathryn Tullos, ITSAN President, presented a poster presentation at SID’s Annual Conference, developed in collaboration with Allergy Asthma Network (AAN) on survey results on cumulative exposure to corticosteroids in patients with eczema, including Topical Steroid Withdrawal Syndrome. Learn more here.
Inside the Exhibit hall. A look at all of the poster presentations and presenters. ITSAN President Kathryn Tullos during poster presentation, presenting and being presented to. Selfie in the Exhibit Hall after the second day of poster presentations – about to take the poster down and fly home.
Photo Credit (pictures 2 & 3): SID meeting 2022 photo gallery
JULY: NATIONAL ECZEMA ASSOCIATION – ECZEMA EXPO
Kathryn Tullos, ITSAN President presented on TSW Syndrome with Dr. Peter Lio. Kathryn and Kelly Barta, ITSAN Board Member and former ITSAN president, participated in a TSW panel discussion at the Eczema Expo.
Kathryn and Kelly at the National Eczema Association’s Eczema Expo in Seattle, Washington with members of the eczema & TSW community!
JULY: 8TH EAST-WEST INTEGRATIVE MEDICAL
SYMPOSIUM
Kelly Barta, ITSAN Board Member and former ITSAN President presented at the 8th East-West Integrative Medical Symposium and discussed “Topical Steroid Withdrawal Syndrome: The Reality and Evolution of the Movement,” including an overview of the condition and challenges faced by TSW Syndrome patients.
PATIENT SUPPORT
Join us for a TSW warrior and caregiver virtual support group on Tuesday, September 13 at 5:30pm ET/9:30pm GMT/11:30pm CET. Discussion will include coping with the emotional side effects of TSW. Please note that ITSAN does not diagnose or recommend treatment or medication. Join the meeting here.
NEW RESOURCES ON ITSAN.ORG
Find new resources and information for TSW patients, caregivers of children and caregiver partners! Check out TSW media coverage worldwide, medical and scientific literature, and ways to advocate to raise TSW awareness. Learn more here.
ITSAN’s new Resources section was made possible by a GlobalSkin Member Impact Fund grant.
CONGRATS TO OUR ITSAN AUTHORS!
We are pleased to share that Kathryn Tullos, ITSAN President and Kelly Barta, ITSAN Executive Board Member and former ITSAN President, are among the authors of a recently published JAMA Dermatology article: “The Multidimensional Burden of Atopic Dermatitis Among Adults: Results From a Large National Survey.” Read more here.
TSW in the Literature!
Thank you to the TSW community! You may not have known it, but you were raising TSW awareness in the medical community every time you used the hashtag: #topicalsteroidwithdrawal
Learn more here.
“Topical Steroid Withdrawal Syndrome – Time to Bridge the Gap” a recently published article in the British Journal of Dermatology joins the call for improved TSW Syndrome recognition, patient support and care. TSW sufferers and caregivers, keep speaking up, change is coming! Link to article here.
ITSAN BOARD NEWS
ITSAN interviewed Kelly Barta, ITSAN Executive Board Member, former ITSAN President and President of the Coalition of Skin Diseases about overcoming TSW Syndrome and her book “To Eczema, with Love.” Watch Kelly’s interview here.
Donate
Every donation will help us bridge the gap as we design and build a patient registry to establish TSW prevalence, advance research and improve patient care.
If you have wanted to help in the past, this is the time to join us – to celebrate ITSAN’s work as a nonprofit – and to support our work ahead.
Donate here.
ITSAN 2021 ANNUAL REPORT
Learn about ITSAN’s accomplishments in 2021, our mission, vision and financial overview here.
THANK YOU ITSAN SPONSORS
ITSAN has 3 amazing sponsors! The generous giving of our sponsors allows us to do the important work of our mission – raising awareness of TSW and supporting all affected individuals. If you would like to become a sponsor, or know someone who would, please email or pass on our contact information – info@itsan.org
A word about ITSAN sponsorships: ITSAN does not endorse, promote, or write reviews of any product. ITSAN recognizes the need to fund our mission, and we believe that advertising products is not in the best interest of our community or our sponsors. Sponsorships support the mission of ITSAN as we serve an underserved community by providing free information, print materials, an online support network, conducting/publishing surveys to help inform the medical community, developing a patient registry and more. It’s big, important work! And we are so grateful for the care and interest of our sponsors in supporting ITSAN and the TSW community.
ITSAN sponsorships include:
– Sponsor logo in 2 places on ITSAN.org
– Sponsor logo on quarterly newsletter – “Thank you to our sponsors”
– Monthly thanking of our sponsors on our Social Media channels
ITSAN sponsorships do NOT include:
– Customized advertisements, promotional giveaways, writing reviews or sharing discount codes
If you would like to become a sponsor, or know someone who would, please email or pass on our contact information – info@itsan.org
And THANK YOU! A heartfelt thank you to all of our donors whose generosity has allowed us to do this important work. No one should go through this debilitating condition alone or without proper medical support.
Together we can raise awareness and prevent this condition for others in the future. Please donate on our website or through our PayPal Giving Fund. Remember in the US, you can donate with every AMAZON purchase on AmazonSmile. Choose International Topical Steroid Awareness Network as your charity.
Many employers will also match funds, which ITSAN qualifies for using Tax ID 45-4556484 and address P.O. Box 303, Dacula, GA 30019. For more information email info@itsan.org
Thank you all!
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