Scleroderma Overviews, Lab Test, Symptoms and Disease Specific
A Scleroderma Overview: Updates for the newly diagnosed and our long-term warriors (2025)
Dr. Surabhi Khanna
Scleroderma Overview: for our newly diagnosed and longtime warriors (2025)
Dr. Andrew Gross, Professor of Medicine, UCSF
Beyond Cold Hands: Understanding and Managing Raynaud's in Scleroderma (2025)
Dr. Monica Yang, Assistant Professor of Medicine, UCSF
Management of Severe Salivary Hypofunction and Prevention of Associated Complications (2025)
Dr. Caroline Shiboski, Professor of Dentistry and Orofacial Sciences, UCSF
Scleroderma and Your Skin: A Practical Overview (2025)
Dr. Charlotte Hurabielle Claverie, Assistant Professor, UCSF
Reflux, Dysphagia, and More: Understanding Esophageal Problems in Scleroderma (2025)
Dr. Priya Kathpalia, Associate Professor, UCSF
Scleroderma and the Lungs: Recognizing and Managing Interstitial Lung Disease (2025)
Dr. Rupal Shah, Medical Director of Adult Patient Experience, UCSF
Scleroderma Research and Clinical Trials, What's New? (2024)
Dr. Francesco Boin
https://youtu.be/xxHokd8x-T4?si=wKVh0wZPjK0csZWx
Non-pharmacological Management of Lung Disease and Role of Pulmonary Rehabilitation (2024)
Dr Tanzira Zaman
https://youtu.be/94PQgADkyHU?si=hN41FuuST8Zmod4i
Upper GI Involvement Update (2024)
Dr. Ali Rezaie
https://youtu.be/VrJJeSwKoJU?si=omzwksJKzq0CK2hG
Townhall Meeting: Audience Q&A (2024)
with the Experts Dr. Boin, Dr. Bottini Dr. Zaman and Dr. Rezaie
https://youtu.be/4SzCUO8-iRQ?si=KkHu0nc45AS3uBMJ
Update on Hand Surgery for Scleroderma (2023)
Dr. James Chang, Chief, Division of Plastic & Reconstructive Surgery, Johnson & Johnson Distinguished Professor of Surgery (Plastic Surgery) & Orthopedic Surgery, Practice in Hand & Microsurgery Stanford University Medical Center (Time: 8.03.54:)
https://youtu.be/BJDkxHs3s-s?si=aDg1DXyd59afKCGx
Overview on Gastrointestinal symptoms and treatment in scleroderma (2023)
Dr. John Clarke, Clinical Professor, Medicine - Gastroenterology & Hepatology, Gastroenterologist, Motility specialist Stanford University Medical Center (Time: 108.54)
https://youtu.be/BJDkxHs3s-s?si=aDg1DXyd59afKCGx
What You Need to Know About Systemic Sclerosis and Research (2023)
Dr. Lorinda Chung, MD, MS Professor of Medicine and Dermatology, Division of Immunology & Rheumatology Stanford University Medical Center (Time: 226.59)
https://youtu.be/BJDkxHs3s-s?si=aDg1DXyd59afKCGx
PATIENT PANEL:
Teresa De La Cruz, Falguni Desai, Bill Bronner and Chris Higgins (Time: 342.55)
https://youtu.be/BJDkxHs3s-s?si=aDg1DXyd59afKCGx
Understanding Heart Related Symptoms in Scleroderma - What to Look For (2023)
Dr. Daniel Furst
Virtual Patient Education Day with Cedars Sinai Scleroderma Center of Excellence (2022)
Dr. Francesco Boin and Marianne Bernardo: Introduction to the Cedars-Sinai Clinical and Research Program
Dr. Francesco Boin: Clinical Updates in Scleroderma
Dr. Nunzio Bottini: Research Updates in Scleroderma
Dr. Ali Rezaie – Understanding Small Intestinal Bacterial Overgrowth in Scleroderma Patients.
Open floor Q&A for all speakers
Understanding Raynauds and Digital Ulcers in Scleroderma (2022)
Dr. Philip Clements
Renal Crisis in Scleroderma (2022)
Dr. Philip Clements
Understanding ANA and Antibody Testing for Systemic Sclerosis - A Helpful Guide for Patients (2021)
Ed Harris: Scleroderma Education Project
Sjogren's Syndrome in Scleroderma (2018)
Dr. Philip Clements
Pain in Scleroderma: Recognizing Its Causes and What Can be Done About It (2018)
Dr. Daniel Furst
Overview in Scleroderma (2018)
Dr. Brian Pedersen
Gastrointestinal Disease in Scleroderma (2018)
Dr. Suzanne Kafaja
Scleroderma and Dentistry (and Dr. Luis personal journey living with scleroderma)
Dr. Luis Del Castillo
Living With Scleroderma: How you can help your dentist help you (2016)
Dr. Dan Sizemore
Scleroderma Overview: What Your Rheumatologist Should've Told You At Your 1st And 2nd Visit (2016)
Dr. Philip Clements
Therapies, Procedures and Treatments in Scleroderma
Scleroderma and The Effects On Daily Life. An important addition to your resources living with scleroderma.
Dr. Penny Stack, OTD, OTR/L, COTA, CLT, NBC-HWC.
The Benefits of Myofascial Release and Pilates Techniques for People Living with Scleroderma (2021)
Physical Therapist Sara Jacobs and Dr. Susan Nynazi
The effects of the myofascial release in diffuse systemic sclerosis’
https://pubmed.ncbi.nlm.nih.gov
Nutritional Tips and Strategies to Help Bypass Scleroderma Problems (2021)
Dr. Susan Nyanzi
Therapeutic Plasma Exchange for Systemic Sclerosis: A Guide for Clinicians (2021)
Ed Harris: Scleroderma Education Project
Cosmetic Procedures and Scleroderma and clinical trials and research findings in Stem Cell Face Therapy (2021)
Lynn Steblecki - Topic:
Stem Cell Transplant in Scleroderma (2018)
Dr. Suzanne Kafaja
Wellness/Emotional Health
Patient Panel: Couples sharing their journey living with scleroderma: San Diego Patient Education Day (September 2025)
Caregiver Panel: Brandon Schoelz, Melanie Ryngler and Angelica Nixon share their personal stories supporting a loved one living with scleroderma from a caregiver perspective: Cedars Sinai Patient Education Day (September 2024)
https://youtu.be/7-K2z0XMoDY?si=heu5Mf-HtsmMJLRo
Caregiver Burnout - Causes, signs and ways to cope (2024)
Dr. Ginny Maril
https://youtu.be/CFpurp_Mn7Y?si=gJwPdztJ702y0ziK
Scleroderma: The Third Wheel in Your Relationship (includes interviews from couples living with scleroderma) (2021)
Elaine Furst https://youtu.be/amXRZ3IYg8U?t=5708
Couples Interviews https://youtu.be/amXRZ3IYg8U?t=8888
Behind Every Dark Cloud is HOPE! (2021)
Andrew Botieri
Caregiving During Challenging Times (2021)
Ginny Maril Ph.D.
Happy in the Now; Living Well in Difficult Times (2020)
Dr. Kathy Gruver
Navigating the Rough Waters of Today: families can be strong vessels! (2020)
Elaine Furst RN
Caregiver Panel - Caring for a Loved One with Scleroderma - ARMC Patient Education Day (2018)
Panel: Pat Guerre, Chris Hulstrom and Pat Major
Caregiver Panel - Caring for a Loved One with Scleroderma - UCSD Patient Education Day (2018)
Panel: Emmanuel Munda, Martha Soto and Scott Noel
Learn to Laugh at What Scares You - ARMC Patient Education Day (2017)
Karen Vazquez
https://www.youtube.com/watch?v=YfA0XnRUGcQ
Scleroderma: Keeping a Healthy Mind - ARMC Patient Education Day (2016)
Ginny Maril Ph.D.
Disability
Documenting Disability: Navigating the Social Security and Supplemental Security Income Claims Process (2020)
Speaker: California Licensed Attorney: Megan DiTolla.
Patient Advocacy
Medicare 101 for the Scleroderma Community: The Medicare Basics, Changes to Medicare in 2025, Difference between Part A, B & D, Costs, Extent of Coverage, Medicare Supplements, Potential Savings (2025)
The Challenges Scleroderma Patients Face When Admitted to the Hospital (2020)
Dr. Susan Nyanzi
The Importance of a Patient Advocate (2018)
Sandy Thigpen
Patient/Family Assistance
Living Well: Quality of Life with Serious Illness (2025)
Greg Merrill, MSW, LCSW - Palliative Medicine, UCSF
NeedyMeds: Help with Healthcare Expenses for the Scleroderma Community (2022)
Carla Dellaporta, Director of User Engagement, highlights the educational and healthcare savings resources NeedyMeds offers - especially for those living with or caring for someone living with Scleroderma.
https://www.youtube.com/watch?v=gmuVGdRVaes
NeedyMeds: Is a National non-profit that connects people to countless healthcare programs, discounts, websites, sliding scales and educational forums they offer for people living with chronic illness and their families, free and anonymously - that will help them afford or save on their healthcare expenses.
Drug discount card: https://www.needymeds.org/drug-card-print
Brochure: https://www.needymeds.org/PDF/brochure_english.pdf
Patient Education Booklet: https://www.needymeds.org/PDF/Patient_Education_Booklet.pdf
Updates in Scleroderma Research, Clinical Trials and Treatment
Scleroderma Therapies: The Past, The Present, The Pipeline (2025)
Dr. Brian A. Pederson, MBBS
Clinical Trials—They Never Actually Fail (2020)
Daniel E. Furst MD
The Latest Updates in Scleroderma Clinical Trials (2018)
Dr. Jonathan Mills
The Upside and Downside of Participating in a Clinical Trial (2017)
Elaine Furst
Webinars in Spanish
Esclerodermia y Nutrición (Scleroderma and Nutrition) Spanish Webinar
Irlanda Fosado Salas and hosted by Alejandra Serrano.
Scleroderma and Covid-19
Scleroderma and Covid-19, New Variant(s) and what you now need to know (2022)
Dr. Daniel Furst
Covid-19 Vaccines, New Variants and Research Findings (Mid 2021)
Dr. Daniel Furst
COVID19 Testing & Vaccination (Early 2021)
Dr. Daniel Furst
COVID19: Ever changing: treatments, vaccinations and telemedicine (2020)
Dr. Daniel Furst
Podcast
Guest: Dr. Luis Del Castillo, Scleroderma Warrior and Doctor of Dentistry (February 2021)
Guest: Dr. Susan Nyanzi Returns (March 2021)
Guests: Dr. Elizabeth Volkmann, Dr. Heather Bukiri and Research Coordinator Talaya Martinez from the UCLA’s Center of Excellence/ Scleroderma Program (April 2021)
Guest: Airick G (May 2021)
Guest: Ed Harris, educator, advocate, researcher and patient from the Scleroderma Education Project (May 2021)
https://www.facebook.com/SclerodermaCA/videos/the-sclero-sun-podcast-s2e7-ed-harris/754998355185534/
Guest: Andrew Botieri (July 2021)
Guest: Lynn Steblecki (August 2021)
Guest: Dr. Brett Thombs of the Scleroderma Patient Intervention Network (SPIN) (October 2021)
Guest: Scleroderma Australia Takes the Icy Hands Challenge Special
Guest: Dr. Francesco Boin, Dr. Nunzio Bottini and study coordinator, Marianne Bernardo from Cedar Sinai's Scleroderma Center of Excellence (June 2022)
Guest: Host Anna Strong interviews the Scleroderma Foundation of California's staff: Andrew Emmett, Executive Director, Tina Burger, Patient Services Director and
Sheryl Bishop, Community Liaison. Join us to learn about our new name and what that all means for our community (July 2022)
Sclero-Sun Podcast S3E3: Part 1 - Meet our New California Support Group Leaders (January 2023)
https://youtu.be/nF5OO5NcUQ0?si=NpjTQEEPeS4nvSk3
THE SCLERO-SUN PODCAST S3E3 -Part 2 OUR EXPANSION ANNOUNCEMENT
Our two new Support Group's in Honolulu Hawaii and Las Vegas Nevada (January 2023)
Celebrations/Awareness and Fundraisers
2021 Scleroderma Foundation of California: Virtual Stepping Out to Cure Scleroderma (edited version)
2021 Southern California Virtual Stepping Out to Cure Scleroderma (Long Version)
2021 Foundation Celebration: Honoring our scleroderma warriors
Join us for an evening of celebration as we honor and celebrate those who have worked above and beyond to help the Foundation raise awareness, provide education & support, and raise funds during the COVID-19 pandemic: https://youtu.be/7St-no8En5Q
Dr. Dan Furst takes the Icy Hands Challenge (2021)
Board Member of the Scleroderma Foundation of California; Joel Cherman takes the Icy Hand Challenge (2021)
Vertical Cure (2021)
Join Board Member of the Scleroderma Foundation of California; Chris Corman along with his family and friends at the annual Vertical Cure to help raise awareness and funding for scleroderma.
2020 Scleroderma Foundation of California: Virtual Stepping Out to CURE Scleroderma:
https://business.facebook.com/SclerodermaCA/videos/921837418292776/
2020 Foundation Celebration: Honoring our scleroderma warriors
Join us for an evening of celebration as we honor and celebrate those who have worked above and beyond to help the Foundation raise awareness, provide education & support, and raise funds during the COVID-19 pandemic:
https://www.facebook.com/watch/?v=681931852521219
2020 Foundation Celebration Honoring our scleroderma warriors (full event with preshow)
Scleroderma March Madness Basketball Tournament (2017)
The Scleroderma Foundation of California holds its first annual March Madness Basketball Tournament at the Pacific Beach Recreation Center in San Diego, CA. Organized by Nick Manessis in Memory of his aunt Susan France Walker who lost her battle to scleroderma in 2009.
