National Scleroderma Foundation

Start planning for Conference 2023!

Are you ready for the Kids Get Scleroderma Too! and National Scleroderma Conference in July? This year, the conferences will be held at the Signia by Hilton Orlando Bonnet Creek on July 14, 15, and 16. If you are interested in seeing what will be discussed at conference, check out our schedule at a glance on our website. Visit the link to see what is in store for the 2023 National Scleroderma Conference!

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Stepping Out to Cure Scleroderma

Celebrate 20 years of Stepping Out to Cure Scleroderma with us! By participating in one of our awareness walk events, you help support the mission of the National Scleroderma Foundation and change the lives of the scleroderma community.

Join a walk

2023 Pediatric Pain Warrior Summer Camp

Our friends at the U.S. Pain Foundation have invited the pediatric scleroderma community to their 2023 Pediatric Pain Warrior Summer Camp. The Pediatric Pain Warrior, a program of the U.S. Pain Foundation, is excited to announce its 2nd Annual Pediatric Pain Warrior Family Summer Camp will be held June 25-29 at Morgan’s Wonderland Camp in San Antonio, TX. This five-day summer camp is for our pediatric pain warriors and their families. During the week, families will participate in fun camp activities (such as adaptive biking, ropes courses, swimming, and more), educational sessions, and daily support groups. Plus, there may be a few surprises from our favorite mascot, Pete the Penguin!

Learn more about the family camp here: Pediatric Pain Warriors

Only a few spots remain - apply today. Please direct any and all questions to Casey Cashman, Director of the Pediatric Pain Warrior Program, at casey@uspainfoundation.org. #PainCounts

Let's light it up!

ICYMI: A training on how to ask for proclamations and light-ups in your community. View the recording here: Let's Get Ready for Awareness Month! If you would like the training tool-kit, please email Caryn Anatriello, Manager of Advocacy and Support here.

Watch on YouTube

Mogil's Mobcast with Aly Cohen, MD

On a recent episode of Mogil's Mobcast, Ann talks with Aly Cohen, MD, who is a Rheumatologist, Integrative Medical Specialist, and Environmental Health Expert. Ann and Dr. Cohen discuss the brain-gut connection. This episode was recorded last October for the National Scleroderma Foundation Minnesota Chapter Health conference. You can listen to all of Mogil's Mobcast episodes on Apple Podcasts.

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American Thoracic Society’s Public Advisory Roundtable 17th Annual Patient/Family Education Day

The American Thoracic Society’s Public Advisory Roundtable invites you to its 17th annual patient/family education day event. This year’s talks will focus on providing pulmonary health care access for all. The ATS 2023 Patients & Experts Forum will be held May 19 - 24 in Washington, D.C., and is free. To sign up, RSVP by email to par@thoracic.org no later than Friday, May 12.

For more information about the program, please contact Mr. Courtney L. White. Email him at cwhite@thoracic.org.

CDMRP for scleroderma researchers: Navigating the Grant Application Process

The National Scleroderma Foundation invited scleroderma researchers to attend a webinar featuring Cecilia Dupecher, Ph.D., for the Peer Reviewed Medical Research Program (PRMRP) at the U.S. Army’s Congressionally Directed Medical Research Programs (CDMRP). The purpose of this webinar is to educate the scleroderma research community about the opportunities for research funding from the PRMRP. Dr. Cecilia Dupecher, the PRMRP Program Manager, will provide an overview of the program with information about how to apply for grants, how applications are evaluated, and other details of this year’s grant cycle. View the recording here.

Parents of Children Living with Scleroderma Support Group

ZOOM: 3 p.m., Eastern, Wednesday, May 3

If you care for a child living with scleroderma, do not miss the Parents of Children with Scleroderma Online Support Group! The group covers various topics to help parents navigate caring for children with scleroderma and finding support. The group meets virtually via Zoom on the first Wednesday of even months (e.g., June, August, etc.) from 7:30 - 9 p.m., and the first Wednesday of odd months (e.g., July, September, etc.) from 3 - 4:30 p.m. Email Pamela Pour for the meeting information.

Scleroderma Riding the Emotional Rollercoaster Part. 2

ZOOM: 10 a.m., Eastern, Saturday, April 29

Spots are still available for the second panel discussion with Ohio Committee Members Debbie and Darryl Haussler, Keith and Lucille Miller, and Kevin and Mariann Boyanowski.

Join the Ohio Chapter for open discussions exploring emotions around Scleroderma. The chapter will have breakout sessions with caregivers and persons living with Scleroderma. Everyone can join the conversation and ask questions. Even if you were unable to join the first session, you will not want to miss part two. This event will be held via Zoom and is free.

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