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VIDEO LIBRARY
Scleroderma Overviews, Lab Test, Symptoms and Disease Specific:
Cedars Sinai Patient Education Day September 7th
Topic: Scleroderma Research and Clinical Trials, What's New? Speaker: Dr. Francesco Boin
https://youtu.be/xxHokd8x-T4?si=wKVh0wZPjK0csZWx
Cedars Sinai Patient Education Day September 7th
Non-pharmacological Management of Lung Disease and Role of Pulmonary Rehabilitation Dr Tanzira Zaman
https://youtu.be/94PQgADkyHU?si=hN41FuuST8Zmod4i
Cedars Sinai Patient Education Day September 7th
Topic: Upper GI Involvement Update. Speaker: Dr. Ali Rezaie
https://youtu.be/VrJJeSwKoJU?si=omzwksJKzq0CK2hG
Cedars Sinai Patient Education Day September 7th
Topic: Townhall Meeting Audience Q&A with the Experts Dr. Boin, Dr. Bottini Dr. Zaman and Dr. Rezaie
https://youtu.be/4SzCUO8-iRQ?si=KkHu0nc45AS3uBMJ
(Northern California Patient Education Day October 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
Topic: Update on Hand Surgery for Scleroderma (Time: 8.03.54:)
Dr. John Clarke, Clinical Professor, Medicine - Gastroenterology & Hepatology, Gastroenterologist, Motility specialist Stanford University Medical Center
Topic: Overview on Gastrointestinal symptoms and treatment in scleroderma (Time: 108.54)
Dr. Lorinda Chung, MD, MS Professor of Medicine and Dermatology, Division of Immunology & Rheumatology Stanford University Medical Center
Topic: What You Need to Know About Systemic Sclerosis and Research (Time: 226.59)
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
Sjogren's Syndrome in Scleroderma-2018
Dr. Philip Clements
(Scleroderma Overview) What Your Rheumatologist Should've Told You At Your 1st And 2nd Visit – 2016
Dr. Philip Clements
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
Pain in Scleroderma: Recognizing Its Causes and What Can be Done About It -2018
Dr. Daniel Furst
Understanding ANA and Antibody Testing for Systemic Sclerosis - A Helpful Guide for Patients – 2021
Ed Harris: Scleroderma Education Project
Therapies, Procedures and Treatments in Scleroderma:
The Benefits of Myofascial Release and Pilates Techniques for People Living with Scleroderma- 2021
Physical Therapist Sara Jacobs and Dr. Susan Nynazi
(For this talk, please add link to Sara's written instructions I attached to this email called 'Scleroderma reformer)
Sara also provided written instructions to help you in addition to the video as well as the article she referenced on ‘The effects of the myofascial release in diffuse systemic sclerosis’ Link copied: Effects of the myofascial release in diffuse systemic sclerosis
https://pubmed.ncbi.nlm.nih.gov › 19761954 DOI: 10.1016/j.jbmt.2008.04.042
Nutritional Tips and Strategies to Help Bypass Scleroderma Problems – 2021
Dr. Susan Nyanzi
Stem Cell Transplant in Scleroderma-2018
Dr. Suzanne Kafaja
Therapeutic Plasma Exchange for Systemic Sclerosis: A Guide for Clinicians-2021
Ed Harris: Scleroderma Education Project
Lynn Steblecki - Topic: Cosmetic Procedures and Scleroderma and clinical trials and research findings in Stem Cell Face Therapy - 2021
Wellness/Emotional Health:
Topic: Caregiver Panel (from Cedars Sanai Patient Education Day 9/7/2024)
Brandon Schoelz, Melanie Ryngler and Angelica Nixon share their personal stories supporting a loved one living with scleroderma from a caregiver perspective.
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: Topic: 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:
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:
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.
Link: 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
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
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 – Feb 2021
Guest: Dr. Susan Nyanzi Returns – Mar 2021
Guests: Dr. Elizabeth Volkmann, Dr. Heather Bukiri and Research Coordinator Talaya Martinez from the UCLA’s Center of Excellence/ Scleroderma Program - Apr 10, 2021 https://youtu.be/N0d8YtSdsW4
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 - Jul 2021
Guest: Lynn Steblecki - Aug 6 2021
Guest: Dr. Brett Thombs of the Scleroderma Patient Intervention Network (SPIN) Oct 15, 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 - Jun 17, 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. Jul 12, 2022
Sclero-Sun Podcast S3E3: Part 1 - Meet our New California Support Group Leaders-
Jan 7, 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 Jan 7, 2023:
https://youtu.be/D91wHguLnHY?si=d4szE1Ii52bO9yfJ
Celebrations/Awareness and Fundraisers:
2020 Scleroderma Foundation of California: Virtual Stepping Out to CURE Scleroderma:
https://business.facebook.com/SclerodermaCA/videos/921837418292776/
2021 Scleroderma Foundation of California: Virtual Stepping Out to Cure Scleroderma:
2021 Southern California Virtual Stepping Out to Cure Scleroderma (Long Version) :
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 run w preshow) :
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.
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.
