| | | Happy National Volunteer Week! Happy National Volunteer Week! We have the best volunteers who selflessly support our mission work by holding leadership positions on our Chapter Advisory Councils, National Board of Directors, Medical & Scientific Board, Patient Advisory Board, planning education and fundraising events such as Stepping Out to Cure Scleroderma, leading support groups, and advocating for scleroderma both nationally and locally. We are grateful to ALL our volunteers – thank you! |
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| | | National Conference schedule is now available! Our schedule at a glance is now available on our website! Visit the link to see what is in store for the 2023 National Scleroderma Conference! |
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| | | ICYMI: Upcoming Stakeholder Update Don't miss our upcoming Stakeholder Update! Learn about progress in our exciting work to strengthen our organization and to build capacity for growth in support of individuals affected by scleroderma, to expand our education programs, and to build greater resources for research funding. During this session, CEO Mary Wheatley, IOM, CAE, will focus on our research pillar. If you would like to learn more, sign up now! |
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| | | Stepping Out to Cure Scleroderma The National Scleroderma Foundation works tirelessly to support our threefold mission – support, education, and research . We need your help! One way you can be a changemaker for scleroderma is by joining one of our Stepping Out to Cure Scleroderma walks.
Join us today by finding your walk at scleroderma.org/steppingout |
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| | | Help Someone Attend Conference This year, we received a record-breaking number of National Scleroderma Conference scholarship applications. With your help, we can award more scholarships to those in need.
Please consider making a gift to the Conference Scholarship Fund to help someone who may not otherwise be able to attend the National Scleroderma Conference or Kids Get Scleroderma, Too! Conference this July.
Go to scleroderma.org/conferencescholarshipfund to make a gift, and thank you for your support! |
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| | | 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 |
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| | | Are you looking for ways to raise awareness and advocate for scleroderma? Join Caryn Anatriello, Manager of Advocacy and Support, for an interactive training on how to ask for proclamations and light-ups in your community. The training will take place at noon, Eastern, Tuesday, April 25. Register in advance for this webinar.
After registering, you will receive a confirmation email containing information about joining the webinar. |
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| | | Last chance to take action!
It's time to urge our elected officials to continue to support the inclusion of scleroderma in the Department of Defense’s eligible conditions list for Fiscal Year 2024!
Our success will mean that scleroderma researchers will be able to continue to compete for federal funds that will help support their groundbreaking work.
We encourage you to take action by April 28, 2023.
Visit the link below to act now! |
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| | | | Mogil's Mobcast with Virginia D. Steen, MD On a recent episode of Mogil's Mobcast, Ann talks with Virginia D. Steen, MD, who is a Professor of Medicine and Chief of the Division of Rheumatology at MedStar Georgetown University Hospital. During the podcast, they will discuss lungs, pulmonary arterial hypertension, and pulmonary fibrosis. 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. |
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| | | ICYMI: 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. |
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| | | 2023 Pre‑Doctoral Summer Fellowship awards The deadline for the 2023 Pre‑Doctoral Summer Fellowship award application is quickly approaching. Applicants can submit their applications until 5 p.m., Eastern Time, Friday, April 28, 2023. PhD Students may submit a proposal on research relevant to adult or pediatric scleroderma. To learn more and apply, visit the link below. |
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| | | The Minnesota and Michigan Chapter Monthly RestorACTIVE Educational Webinar Series ZOOM: 4 p.m., Eastern, Monday, April 24
The Michigan and Minnesota Chapters are proud to welcome Rachel Lando and her RestorACTIVE program! Rachel will be leading the RestorACTIVE (RA) interactive series. RA is a movement option created by patients for patients to discover tools to manage chronic pain or discomfort, move and feel better, and build the resilience to return to a well-loved life. Classes are accessible for all levels, whether you prefer to train on the mat, in a chair, or in bed. |
| The 20%: Males Living with Scleroderma Support Group ZOOM: 7 p.m., Eastern, Wednesday, April 26
Scleroderma diagnoses are less common among males. In fact, only 20% of individuals living with scleroderma are male. We have designed a support group, especially for males with scleroderma. In it, you will learn scleroderma tips and resources and find support from others in your position. Each meeting will focus on a different topic from mental health to intimacy and so much more. The group meets on the fourth Wednesday of the month (with some exceptions) from 7 to 8 p.m., ET. |
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| | Teens & Parents Support Group ZOOM: 10 a.m., Eastern, Friday, April 26
Calling all teens looking to connect with other teens living with scleroderma. The Albuquerque support group will have Teen & Parent Support Group meetings each month on the 4th Saturday via Zoom. The group will be led by Debra Droux, Maria Tafoya, and Jackie Martinez. Email nmsclero@gmail.com or call 505-503-3545 to receive the Zoom meeting information. We ask that a parent or caregiver be present with their teen when the meeting starts. |
| 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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| | 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. |
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