| | | Call for nominations for the 2023 Jacob Davila Memorial Leadership Award The Jacob Davila Memorial Leadership Award embodies the values that Jacob lived out every day. As a teenager, Jacob was diagnosed with scleroderma. Like many with the disease, his path was not an easy one. However, he chose to utilize his education and his convictions as a servant leader to embrace his diagnosis and humbly lead and support those within the scleroderma community.
One awardee will be selected annually based on the following criteria:
- Serves as a volunteer for the National Scleroderma Foundation at the time of nomination and award (July 2023)
- Prepared for service and understands that true wisdom is gained in community and that serving others is a privilege and an honor
- Serves as a community builder who believes in enriching and ennobling the lives of others within the scleroderma community
- Demonstrates characteristics consistent with servant leadership
The Jacob Davila Memorial Leadership Award will be awarded annually to one recipient attending the National Scleroderma Conference and will cover all conference-related expenses. 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 April 14, 2023! |
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| | | Time is running out! Tonight’s the deadline. Today’s your last day to become a Champion member of the National Scleroderma Foundation.
It’s also your last day to give the gift of a Champion membership if you have someone special in mind.
Sign up by 11:59 pm Eastern TONIGHT at www.scleroderma.org/membership. |
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| | | By participating in a Stepping Out to Cure Scleroderma walk, you help us become one step closer to finding a cure!
If you don’t have a walk in your area, you can still participate by signing up for the National Virtual walk. |
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| | | Action alert: Department of Defense’s eligible conditions list for fiscal year 2024
Check out our Action Alert and our campaign 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.
Your part in the campaign is easy. Just use the link below, read about our ask, and complete the built-in form that will send letters right to your Senators and ask them to support strong federal funding for scleroderma research.
We encourage you to take action by April 28, 2023. |
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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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| | | 2023 National Scleroderma Conference Update:
On Friday, July 14, the conference will feature a research poster hall of new and exciting scleroderma research. Don’t miss out on your chance to speak to the researchers live! |
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| | | Last day to apply for a scholarship!
Today is the last day to apply for a 2023 National Scleroderma Conference and Kids Get Scleroderma, Too! scholarship! Download the form and email it. Full instructions are on the form. The deadline to apply is March 31. Scholarships are intended for individuals who are living with scleroderma and are in need of financial assistance to attend the conference. Priority is given to first-time conference attendees, but all are welcome to apply. We look forward to seeing you in Orlando, July 14-16! |
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| | | Mogil's Mobcast with Patricia Fennell
On the recent episode of Mogil's Mobcast, Ann talks with Patricia Fennell MSW, CSW-R, who is a scientist, clinician, and author specializing in chronic illness, trauma, forensics, and hospice care.
Patricia is the CEO of Albany Health Management, Inc., an organization that treats and examines global health care concerns through clinical care, consulting, research, and professional education, utilizing the empirically validated Four Phase Model and Fennell Four Phase Treatment (FFPT™) approach. |
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| | | 2023 Pre‑Doctoral Summer Fellowship awards The 2023 Pre‑Doctoral Summer Fellowship awards application deadline is 5 p.m., Eastern Time, Friday, April 28, 2023. The program encourages and fosters the next generation of researchers by cultivating students’ early interests in working to discover the cause and cure of scleroderma. Students may submit a proposal on research relevant to adult or pediatric scleroderma. |
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| | | Participate in a systemic sclerosis upper extremity health management manual study There's an opportunity to be involved in a study evaluating the manual called EmPOWERment. A Systemic Sclerosis Upper Extremity Health Management Manual. The manual has four sections: 1) Build systemic sclerosis knowledge for quality rheumatology appointments; 2) Gain self-management skills; 3) Learn useful hand and skin care strategies and exercises; and 4) Improve understanding of hand surgeries for issues caused by scleroderma.
To be considered for this study:
- Have an official diagnosis of scleroderma or systemic sclerosis diagnosed by a doctor
- Live in the United States
- Be fluent in the English language, both in written and verbal communication
- Have access to a computer with internet
- Be at least 18 years of age or older
You will be asked to review the manual electronically on your computer. Spend as much time as you want reviewing the manual - skim the material or read it in depth. Any level of review and feedback is appreciated and helpful! Then, you will be asked to complete a brief, online survey asking for your feedback on the manual content.
If you’re interested in participating, please email the principal investigator at jkstenger@hotmail.com.
Please note: there's a limit of 20 participants for this study. |
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| | | Parents of Children with Scleroderma ZOOM: 7:30 p.m., Eastern, Tuesday, April 5
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. |
| El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia te invita a su evento hibrido “Ejercicios para controlar el estrés y emociones”
The Bilingual Support Group of the National Scleroderma Foundation invites you to its hybrid event “Exercises to control stress and emotions.”
Fecha/Date: 1ro. de Abril /April 1, 2023
Hora/Time: 11:00 a.m. EST
Por favor envíe sus preguntas al correo electrónico/ Please send your questions to the email: miamiradgroup@gmail.com
A continuación, vínculo para registrarse al evento / To register, please go to:
https://forms.gle/PQzgRpgPB12xbc1z7 |
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