eNews: March Edition
Remembering Bob Saget
How Two of Bob's Friends Honor His Dedication to Ending Scleroderma
We remain overwhelmed by the outpouring of involvement and support from people worldwide who are finding personal ways to honor Bob by supporting a cause near to his heart: ending scleroderma. Here's how two of his close friends, John Mayer and Candace Cameron Bure, have shown their love for Bob and honored his legacy. Together they have raised nearly $300,000 for scleroderma research!
John Mayer collaborated on a Bob Saget memorial hoodie with @littlepatterns and @deansnuts to help raise funds and awareness for the SRF.
@theshopforward is donating 100% of proceeds from sales of apparel created by Candace Cameron Bure in honor of Bob.
SRF Research
SRF-Funded Researchers Present at World Systemic Sclerosis Congress
We're pleased to share that the following SRF-funded researchers will be presenting at the 7th Annual Systemic Sclerosis World Congress on March 10-12: Dr. Shervin Assassi, Dr. Tracy Frech, Dr. Dhinesh Khanna, Dr. Zsuzsanna McMahan, and Dr. Elizabeth Volkmann. Scientific convenings like these contribute to the collective understanding of scleroderma, and the researchers who participate in it help to further collaboration on a global scale.
Sarah Wood, Research Coordinator, Shares Why CONQUER Is "Unlike Any Other Research Study"
Meet Sarah Wood, the Clinical/Translational Research Coordinator at Vanderbilt University Medical Center. A recently graduated master's student who researched autoimmune diseases, she's now turning her focus to ending scleroderma. She serves as the coordinator at Vanderbilt for CONQUER (COllaborative, National QUality and Efficacy Registry), the first-of-its-kind nationwide, longitudinal registry of scleroderma patients launched by the SRF.

"Since joining CONQUER, it has been a joy of mine getting to know our patients and forming a more personal relationship, walking alongside them and supporting them in every way possible throughout their journey," Sarah says. "It is incredible and unlike any other research study I have worked on previously."

CONQUER's potential to unravel the mysteries of scleroderma comes from you. As Sarah says, "Scleroderma may be a rare disease, but there is unbelievable hope and perseverance in finding a cure, and our patients are helping with that."

If you're interested in participating in CONQUER, visit our website to review your eligibility and find a center near you.
More questions about CONQUER or participating in research? Email Gloria Blecha, Director of Community Engagement, at gloria@sclerodermaresearch.org
Making a Difference
Thank You for Being Amazing Advocates for Raynaud's Awareness
This Raynaud's Awareness Month we asked you to spread awareness, share your personal stories, or suggest life hacks for others to try, and we’ve been blown away by your responses! We're spotlighting just a few of the many community members who stepped up to spread the word.
Raynaud's Stories
Dani shares how Raynaud's helped lead to her scleroderma diagnosis.
Meredith shares tips and strategies for helping her daughter Alexis (pictured here) manage Raynaud's.
Kimberly creates content and shares on social media to educate her followers on Raynaud's.
Greg Runs for a Cure
Greg was diagnosed with scleroderma in April 2017, after experiencing symptoms for three years. Within just one week, Greg dedicated himself to becoming a scleroderma advocate. Read more about how he uses his talents and passions to raise awareness.
Did You Know?
Taking Scleroderma Advocacy to the White House
Did you know that SRF Founder Sharon Monsky and founding Board Member Susan Feniger met with President George H. W. Bush to increase awareness about scleroderma? Read more about their work to help create the very first federally recognized Scleroderma Awareness Month.
Cure Crew Events Are Back and on a Roll
Bet on a Cure
Last month the Kosmach-Schumacher families hosted their annual Bet on a Cure casino event, an upbeat gathering to raise awareness and funds for scleroderma research. They have a 27-year history of hosting events to support the SRF, after losing their mother Joan Kosmach to scleroderma in 1995. Read more about why this family is dedicated to helping advance research.
Best Medicine
Long-time Cure Crew members, the Connors-McBride/Zini family, continued their seven-year tradition of producing a comedy show called "Best Medicine" to raise funds for a cure. Maureen Connors-McBride, who lost her mother Patty (pictured here) seven years ago to scleroderma, shares what makes this event so meaningful for them.