eNews: October Edition

SRF News

You're Invited: Webinar on Advances in Pulmonary Arterial Hypertension Research

Tuesday, November 8

1:00 pm ET/10:00 am PT


Featuring Roham Zamanian, MD (Associate Professor of Medicine in the Pulmonary and Critical Care Medicine Division at Stanford University)


Get to know the symptoms of PAH, how it’s diagnosed, advances in available therapies, and the challenges of conducting SSc-PAH research. (1 hour webinar with live Q&A)

Register Now

Cool Comedy • Hot Cuisine, a Tribute to Bob Saget, raises more than $1.3 Million for Research

Thanks to everyone in the room, and to all those who supported the event from afar, the event raised more than $1.3 Million to fund the most promising scleroderma research so we can one day achieve Bob Saget’s dream of ending this disease.

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Making a Difference

Regina Hall at Cantor Fitzgerald Charity Day

We're so grateful to SRF Board Member Regina Hall for representing us at the Cantor Fitzgerald Charity Day this year.


Every year, since 9/11/2001, Cantor Fitzgerald commemorates the 658 employees lost in the World Trade Center attacks by supporting dozens of nonprofits worldwide. This year, we're honored to be among those selected, and we're so grateful to SRF Board Member Regina Hall for representing our work onsite. Thanks so much to Regina and to Cantor Fitzgerald for helping make a meaningful difference in funding research to end scleroderma!

Cars and Coffee

for a Cure

Inspired by his wife, Amy—who was recently diagnosed with scleroderma—Mike decided to raise funds and awareness so that others would know what this disease is and does.


Along with his business partner, Eric Peet (of Mike's Autobody), and Asa Gladstein from Squad Driven, he created a car and coffee event on September 3, 2022 that brought 80+ cars and supporters out for a great day. 


They raised $5,000 at this first event, and Mike is already motivated to double the fundraising for next year “to find a cure someday."

Crowdfunding:

A Birthday Celebration

Matt and Becky’s daughter, Kate, has scleroderma—and they are all passionate about advocacy for a cure. When their shared birthday month, August, came this year, they decided to make it extra meaningful by adding SRF fundraising to their celebrations.


They created a Crowdfunding Campaign on SRF’s Cure Crew fundraising page. Over 30 people donated! Our gratitude goes to the whole family and all of their friends for including the SRF in this special month.

Read Kate's Story
Make Your Own Crowdfunding Campaign

SRF Spotlight

Jessica's Story

"I want to show the world that it's OK to be different and not be ashamed of any illness you're going through."


Read more about Jessica's journey to diagnosis, her commitment to advocacy, and why research matters to her.

Read More

Resources and Opportunities

Patient Volunteers Needed

The SRF helping to identify volunteers who may wish to serve on a Patient Advisory Board for one of our pharmaceutical company partners. Their goal is to better understand the patient experience from initial symptoms through diagnosis and treatment in order to identify the unmet needs of systemic sclerosis patients. 

 

This Patient Advisory Board will be made up of approximately 10 people who are able to attend an in-person meeting in New Jersey on December 14, 2022. Patient participants will receive compensation for their time, meals, travel, and hotel.

 

Qualifications: Patients must be age 35+, have early stage SSc (preferably less than 5 years since diagnosis or symptom onset), and have some form of vascular involvement (digital ulcers, pulmonary hypertension, etc.).

 

If you are interested in this opportunity and would like to learn more, please email us by Monday Oct. 17th! Be sure to include your age, SSc diagnosis date, related vascular complications, home city/state location, and phone number in your message.

Email Us

Support the SRF through the Combined Federal Campaign

Calling all federal employees or retirees—the Combined Federal Campaign (CFC) is now open!


As the official workplace giving campaign for those employed by the federal government, the CFC has raised more than $8.6 billion for nonprofits since its inception. Some of these funds have been designated for the SRF by our community members, making a real and meaningful difference in advancing scleroderma research.


If you're a federal employee or retiree, please consider selecting us to be the recipient of your support through the CFC by January 14, 2023. Our CFC number is #11847 and our Tax ID is #68-0087234. 

Learn More
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