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Scleroderma Foundation
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eLetter #928 | July 30, 2021  
Mary J Wheatley

Strategic Plan Update

GOTOWEBINAR: August 3, 1 p.m. Eastern Time

Join us for an update on our 2020-2022 Strategic Plan hosted by our new CEO, Mary Wheatley. This 30-minute webinar will be held Tuesday, August 3 at 1 pm ET. To register for the webinar, please visit the link below.

REGISTER

GuideStar Gold Star

Platinum GuideStar Status

Great news! The Scleroderma Foundation just earned the Platinum Seal of Transparency from GuideStar, the world’s largest source of nonprofit information. To reach the Platinum level, we added extensive information to our Nonprofit Profile: basic contact and organizational information; in-depth financial information; quantitative information about goals, strategies, and progress toward our mission. By sharing key metrics, we’re helping the sector move beyond simplistic financial ratios to assess nonprofit progress. We chose to display quantitative metrics to represent how hard we are working toward achieving our mission. We’re proud to use GuideStar Platinum to share our full and complete story with the world.

GUIDESTAR

Advocacy Demi Senator Portman Capitol Hill Day


Advocacy 2018 Capitol Hill Day Todd Gilligan

Advocacy Quiz: No Experience Required!

Take this fun, brief Advocacy Quiz to see how much you know. No advocacy experience required!

The difference between awareness and advocacy can be as simple as your audience. Imagine wearing a scleroderma event t-shirt while running errands, and someone asks what that hard to pronounce word means. In that context, answering the question and sharing information raises awareness about scleroderma.

When you meet with your Senator or Representative to talk about scleroderma and how it affects your life, that raises awareness. Advocacy enters the picture when asking them to support efforts like legislation to fund scleroderma research. Congress has the power to affect change for people living with scleroderma.

As a direct result of grassroots advocacy efforts over the last several years, Congress designated $10 million for scleroderma research in 2020 and 2021. Current advocacy efforts are focused on $5 million for scleroderma research for 2022.

Take the quiz, add your voice, and let’s find a cure!

Michigan Parents of Children with Scleroderma August 2021

Parents of Children with Scleroderma Support Group

ZOOM: August 4, 2021; 7:30 p.m. - 9 p.m. Eastern Time
Topic: Tips for Going Back to School

Returning to school can be challenging for any child. But it can be especially hard when your child has scleroderma and our world is recovering from a pandemic. Join the Michigan Chapter for an online support group on August 4 from 7:30 to 9 p.m. to find tips for a smooth and fun transition. We’ll start with welcome remarks and an icebreaker, then move on to an educational session with helpful tips, and end with a closing mindful moment. Register now and find support and hope in the community.

REGISTER

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Health Advocacy Summit 2021 August 7/ 8

Health Advocacy Summit

VIRTUAL: August 7 & 8; 11 a.m. - 5 p.m. Eastern Time

Health Advocacy Summit (HAS) will host its 2021 annual summit virtually. Opening comments from Selma Blair sets the scene for two days of workshops that range from global health policy to advocating for your future to media representation of chronic illness, and much more. Founded in 2016 by Sneha Dave, HAS is run entirely by young adults with chronic medical disabilities.

REGISTER

SYNC Meet Up Young Adults Tri-State August 2021

SYNC: Scleroderma Young Adults Needing Connection

ZOOM: Friday, August 13 at 7:00 p.m. Eastern Time

SYNC, Scleroderma Young Adults Needing Connection, invites you to join their August meeting for a general discussion among young adults between the ages of 18 and 42 looking to connect with other individuals affected by scleroderma. For questions, please email Amy Gietzen, agietzen@scleroderma.org, or Natalie Puccio, nataliepuccio18@gmail.com.

REGISTER

World Lung Day 2021 Partners

Proud Partner with World Lung Day

The Scleroderma Foundation is proud to be a partner in World Lung Day (WLD), September 25, a day for lung health advocacy and action. WLD is an opportunity for us all to unite and promote better lung health globally. The theme this year is "Care for Your Lungs:" say no to tobacco, protect them through vaccination, breathe clean air, and take regular physical exercise.

LEARN MORE

PEDRA Annual Conference 2021

9th PeDRA Annual Conference

VIRTUAL: October 14-15, 2021

The Pediatric Dermatology Research Alliance (PeDRA) will hold its 9th annual conference virtually October 14-15. Free registration is available to all patient stakeholders until September 20, after which there will be a $15 fee. This applies to patients and parents as well as organizational staff and leadership. To register for free, follow this link and use the “Community Early Registration” category.

LEARN MORE

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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