THIRD QUARTER 2022 NEWSLETTER
Hello TSW Community!
We took you with us as we raised TSW Syndrome awareness on Capitol Hill. In September, ITSAN Board members attended annual legislative conferences with the American Academy of Dermatology (AAD) and the Coalition of Skin Disease (CSD). We shared our personal stories and the urgent need for safer topical steroid prescribing guidelines, accurate TSW Syndrome diagnosis and treatment, and critical medical education. Each step of the way we consider the urgent need of the global TSW community.
We can’t do it alone and we appreciate your support as we fight for change. Jodie Ohr, ITSAN Treasurer shares, “People are often very surprised to hear that you could fit all of ITSAN into one vehicle (albeit a larger one); when I say we’re a small non-profit, I mean small. We run on a very lean budget and have grand plans for support for those in our community, and we need funds to push us into the next stage of growth for an organization our size.
We are a 501(c)(3) non-profit charity, so please consider a tax-deductible donation at www.itsan.org/donate. We are very grateful and your high-impact support will go towards a patient registry implementation which will drive much-needed clinical research, as well as to programs that support our 16k members globally and awareness in the physician community.”
Learn about ITSAN’s TSW Syndrome Patient Registry here.
ITSAN Executive Board Members attend legislative meetings with fellow CSD members to advocate for patients.
ITSAN members after meeting with senators’ offices to advocate for TSW patients. No mountain is too high to overcome.
Natalie Lawton and her CSD team on Capitol Hill.
Kelly Barta presenting her TSW story at the AAD Legislative Conference.
ADVOCACY & EDUCATION
SEPTEMBER: World Atopic Eczema Day
ITSAN raised awareness, for the third year in a row, about World Atopic Eczema Day, on September 14th! World Atopic Eczema Day launched in 2018 in order to raise awareness about the disease. It is an initiative coordinated by GlobalSkin and the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA).
ITSAN hosted an Insta Live with Kathryn Tullos, ITSAN President and Briana Banos, the creator of the documentary “Preventable” on the necessity for topical steroid labeling changes to better inform and protect patients.
Watch the LIVE here.
Currently, much needed usage and dosing information about topical steroids is absent or confusing. Watch this short video to learn more.
Did you have the information you needed to make an informed decision about topical steroids?
Help us petition for safer, more accurate labeling of topical steroids!
Having standardized usage instructions on the label will help both patients and doctors prevent overuse as well as recognize symptoms of adverse effects when they arise.
Sign the petition for safer labeling of topical steroids here.
Together we can raise our voices and help end TSW Syndrome!
ITSAN & AAN SURVEY ABSTRACT PUBLISHED!
Kathryn Tullos, ITSAN President and Kelly Barta, ITSAN Executive Board Member and President of the Coalition of Skin Diseases, are among the authors of a recently published abstract in the Journal of Investigative Dermatology, “International Survey: Effects of Cumulative Exposure to Corticosteroids in Patients with Eczema, Including Topical Steroid Withdrawal Syndrome (TSWS). Read more here.
The article abstract was developed in partnership with the Allergy Asthma Network (AAN) and Chicago Integrative Eczema Center, and it was presented by ITSAN as a poster presentation. Collaborating authors were Tonya Winders, President/CEO of AAN, and Dr. Peter Lio of the Chicago Integrative Eczema Center. ITSAN presented the abstract at the Society for Investigative Dermatology Annual Meeting in Portland, Oregon, USA in May 2022.
OCTOBER: ITSAN & AAN SURVEY PUBLISHED!
Thank you to the eczema and TSW communities who took the survey in late 2020/early 2021 that was developed by ITSAN and the Allergy Asthma Network (AAN). You are part of bringing change and making history! Kathryn Tullos, ITSAN President and Kelly Barta, ITSAN Executive Board Member and President of the Coalition of Skin Diseases, are among the authors of the recently published article in the Annals of Allergy, Asthma & Immunology, “Corticosteroid Exposure and Cumulative Effects in Patients with Eczema: Results from a Patient Survey.” Collaborating authors were Dr. Luz Fonacier, Dr. Peter Lio, Dr. Belinda Sheary, as well as Mary Hart and Tonya Winders of Allergy Asthma Network. Read more here.
We are pleased to share that ITSAN partnered on a recently published British Journal of Dermatology article: “The Sound of Silence: Where are the Voices of Patients in Eczema Guideline Development?” The article was developed in collaboration with the Global Patient Initiative to Improve Eczema Care (GPIIEC), a partnership of eleven patient organizations from around the world working to improve care for eczema patients. Kathryn Tullos, ITSAN President, represented ITSAN as one of the authors of the article.
Many within the TSW community started off with eczema and developed TSW Syndrome after using topical steroids to treat their eczema. The patient voice has the power to improve care within the eczema community and to help prevent TSW Syndrome. The article highlights the critical need for the patient voice in eczema clinical practice guidelines.
Read the article here.
By supporting ITSAN, you will ensure we don’t lose our seat at the table where decisions are made.
Your donation will immediately impact our level of outreach to TSW sufferers and caregivers in need, as well as our work educating medical providers and stakeholders. Your support will help us attend medical conferences, advocate for patients, and elevate resources on ITSAN.org
By supporting ITSAN, you are fighting with us for safer topical steroid guidelines and patient safety.
We need you and everyone in the global TSW community to come together and give in any amount you are able. Help keep ITSAN going and change medical history with us!
Donate to ITSAN’s GoFundMe here.
RAISING TSW SYNDROME AWARENESS
In September 2019, ITSAN was one of five organizations that together launched the More Than Skin Deep initiative to inform treatment research and development for atopic dermatitis, the most prevalent form of eczema. Since then, the initiative has continued its efforts to elevate the national dialogue around eczema and catalyze progress towards more targeted therapies.
The more we can raise awareness within the eczema community, the more we can work together so that TSW Syndrome can be prevented.
Watch “Understanding the Lived Experience of Eczema” here.
Hear voices from the TSW and Eczema communities share their stories.
The Skin Series presents a two-part podcast on Topical Steroid Withdrawal. In “Episode 12: Topical Steroid Withdrawal – Internals,” Melissa Colosimo brings a personal and clinical perspective on TSW Syndrome, as a TSW survivor and naturopath in Australia.
From the complex symptoms TSW patients face, to external and internal coping strategies during TSW, Melissa examines a holistic path to health and wellness for individuals going through TSW Syndrome.
Please note: this resource is not vetted by ITSAN and ITSAN claims no affiliation.
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 – firstname.lastname@example.org
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. Some organizations will triple match funds on Giving Tuesday. For more information email email@example.com
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