| | | 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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| | | Sign up for 2023 National Scleroderma Conference! We will celebrate our 25th anniversary at the 2023 Kids Get Scleroderma Too! Conference and 2023 National Scleroderma Conferences in a few short months. Don’t miss out on meeting scleroderma experts from around the country and connecting with your peers during a fun and engaging weekend! |
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| | | Today is the last day to nominate a loved one for the 2023 Jacob Davila Memorial Leadership Award Today is the last day to apply to the Jacob Davila Memorial Leadership Award! The Leadership Award will be given annually to one recipient attending the National Scleroderma Conference and will cover all conference-related expenses. The award was created in honor of Jacob Davila, who lived with scleroderma and lead others by embracing his diagnosis and supporting those within the scleroderma community. The inaugural award will be granted in 2023 during the National Scleroderma Foundation's 25th anniversary.
Please submit your nomination for the 2023 Jacob Davila Memorial Leadership at www.surveymonkey.com/r/davila23
Deadline for submissions is Today, April 14, 2023! |
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| | | Become a Stepping Out to Cure Scleroderma team captain today!
We need participants like you who are excited to help raise awareness and funding to support our critical mission work.
Together we can accomplish great things, including one day a world without scleroderma.
To join our efforts, sign up today! |
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| | | ICYMI: Support the Foundation while you shop |
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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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| | | Take action before April 28!
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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| | | Don't forget to ask the U.S. Senate to support the Safe Step Act!
Step therapy, sometimes referred to as "fail first,” is a process that requires patients to take one or more alternative medications chosen by their insurance provider before they can access the medication prescribed by their health care provider. When used inappropriately, step therapy can prevent patients from accessing critical treatment. The Safe Step Act (S. 652) would protect patients who obtain insurance coverage through private insurance providers by establishing an exemption process, mandating certain exceptions to step therapy protocols, and requiring a timeframe for insurance plans to respond to exemption or appeal requests. Contact your senators today in support of this important legislation! |
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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 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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| | | Mogil's Mobcast with Tameka Nelson A new episode of Mogil’s Mobcast is out! On this episode, Ann talks with Tameka Nelson, who is an individual living with scleroderma. Tameka shares her positive energy and enthusiasm as she tells us about her experience. You can listen now on Apple Podcasts. |
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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 2023 Pre‑Doctoral Summer Fellowship awards application is quickly approaching. Applicant 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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| | | ZOOM: 7 p.m., Eastern, Friday, April 14
The SYNC Support Group will meet at 7 p.m., Eastern, Friday, April 14. The group will discuss traveling with scleroderma. To learn more and sign up, visit the link below. |
| 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. |
| Monthly Scleroderma Lunch and Learn ZOOM: Noon, Eastern, Wednesday, April 19
Join the Michigan Chapter for their Lunch and Learn Webinar with presenter David Leader DMD, MPH. Dr. David Leader is an Associate Professor and Director of the Emergency Clinic of the Tufts University School of Dental Medicine and is a general dentist who has treated patients who have scleroderma since 1983. He is a member of the National Scleroderma Foundation’s Medical and Scientific Advisory Board and is a consultant for the Scleroderma Patient Intervention Network (SPIN). To learn more and sign up, visit the link. |
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