| | | To celebrate Scleroderma Awareness Month, we are bringing our community together for our first-ever #TealTalk series of virtual roundtable discussions and live conversations with special guests. You won't want to miss this!
Be sure to mark your calendars for these dates and be on the lookout for more information to come. All #TealTalk events are at 12 pm EST and all live events are on Facebook.
Thursday, June 1: #TealTalk Table
Tuesday, June 6: #TealTalk Live
Thursday, June 8: #TealTalk Table
Wednesday, June 14: #TealTalk Live
Thursday, June 15: #TealTalk Table
Tuesday, June 20: #TealTalk Live
Thursday, June 22: #TealTalk Table
Monday, June 26: #TealTalk Live
Thursday, June 29: #TealTalk Table |
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| | | Stepping Out to Cure Scleroderma Join our celebrity ambassador, Ashley Barron, and countless others to support the Stepping Out to Cure Scleroderma walks.
Together we can help support those affected by scleroderma and bring awareness and raise critical funds needed one step at a time.
To find your walk and register, go to scleroderma.org/steppingout |
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| | | Every Life Foundation For Rare Diseases is hosting their first every virtual Youth Hill Day. Advocates ages 10-18 years will have the opportunity to virtually meet with their Members of Congress and share their rare disease story. Virtual trainings will be held prior to hill day. More information and registration can be found here. |
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| | | We have extended our Action Alert! Contact your Senators and ask that they support the inclusion of scleroderma in the Department of Defense’s Peer-Reviewed Medical Research Program. We ask that you reach out to your Senators no later than June 30, 2023. |
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| | | May 21 is the last day for Early Bird Registration Don't miss out on early bird registration for the Kids Get Scleroderma Too! and National Scleroderma Conference. Sign up before May 21 to get the early bird pricing. |
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| | | Invitation to patients to participate in a public meeting about research methods to study scleroderma We invite patients with scleroderma to a virtual public meeting on June 8, 2023, from 9 a.m. - 1 p.m. Eastern, aimed at receiving input on outcome measures in systemic sclerosis (scleroderma). The public format is to elicit input from the multiple stakeholders, including patients, clinicians, investigators, non-profit Foundations, industry partners, the US Food and Drug Administration (FDA), and the US National Institutes of Health (NIH) on the current status of outcome measures ready (or nearly ready) for registration-level clinical trials that would lead to approval of drugs for use by patients with scleroderma. This meeting will include segments on outcomes for various domains of scleroderma, including skin disease, Raynaud’s phenomenon, digital ulcers, interstitial lung disease, pulmonary arterial hypertension, global assessment, and biomarkers.
Patients will have the opportunity to ask questions and leave comments. This is an excellent opportunity for patients with scleroderma to both be informed about current research methods and to provide their input to investigators and government officials.
If you plan to attend, please register by clicking on the link below. Feel free to share this notice with others who may be interested in attending this meeting. There is no charge to participate in this meeting. |
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| | | Announcing Funding Opportunities for the 2024 Grant Cycle The National Scleroderma Foundation is the leading nonprofit supporter of peer-reviewed, scleroderma research to discover the cause, understand the mechanism, and overcome scleroderma forever. Since its inception, the Foundation has committed over $30.8 million for scleroderma research, which continues as a priority of our mission.
Funding opportunities are available for early career and established investigators, and applications are due by September 15, 2023.
Learn more at scleroderma.org/researchapply. |
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| | | Teens and Parents Support Group ZOOM: 3 p.m., Eastern, Wednesday, May 24
Calling all teens looking to connect with other teens living with scleroderma. The Albuquerque support group will have Teens & Parent Support Group meetings each month on the 4th Wednesday 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. |
| The 20%: Males Living with Scleroderma Support Group ZOOM: 7 p.m., Eastern, Wednesday, May 24
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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| | ZOOM: 4 p.m., Eastern, Wednesday, May 21
The next BIPOC Support Group Meeting is on Sunday, May 21, 2023 at 4:00-5:30 Come join us and our speaker Dedra Sibley, Esq. as she discusses “Creating Legacy for your Family.” |
| El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia te invita a su charla virtual vía zoom “Nutrición en Esclerodermia”.
Fecha : 20 de Mayo, 2023
Hora: 11:00 am EST
Por favor envíe sus preguntas al correo electrónico miamiradgroup@gmail.com
A continuación, vínculo para registrarse al evento https://forms.gle/N7isE1z7dvcioGYQ9 |
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| | ZOOM: 7 p.m., Eastern, Monday, May 22
The Tri-State Chapter Support Group will meet on May 22 with guest speaker, Victoria Perry, MVP Health Care. The group will discuss Medicare and everything you need to know about it. For more information, email sdtristate@sclerodermatristate.org. |
| ZOOM: 7 p.m., Eastern, Thursday, May 25
The Caregiver Support Group will meet on May 25 with guest speaker, Kim Brehmer, Regional Coordinator for Lutheran Social Services (LSS). The group will discuss, "Taking Care of You." For more information, email support group leader Debbie Haussler at caregivers@scleroderma.org. |
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