The Scleroderma Foundation California
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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)

https://youtu.be/BJDkxHs3s-s?si=aDg1DXyd59afKCGx


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)



Understanding Heart Related Symptoms in Scleroderma - What to Look For - 2023

Dr. Daniel Furst

https://youtu.be/rF4ZjwYsS4o


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

https://youtu.be/2SJKI00oEyM

 

Understanding Raynauds and Digital Ulcers in Scleroderma-2022

Dr. Philip Clements

https://youtu.be/NEN4Tzf8fpo


Renal Crisis in Scleroderma-2022 

Dr. Philip Clements 

https://youtu.be/QV2QsiSyyxE 

 

Sjogren's Syndrome in Scleroderma-2018 

Dr. Philip Clements 

https://youtu.be/bm-u5PbFK1Y 

 

(Scleroderma Overview) What Your Rheumatologist Should've Told You At Your 1st And 2nd Visit – 2016 

Dr. Philip Clements 

https://youtu.be/gurbvrb9_Qk 

 

Overview in Scleroderma- 2018 

Dr. Brian Pedersen 

https://youtu.be/YtEduC-VaHA 

 

Gastrointestinal Disease in Scleroderma-2018  

Dr. Suzanne Kafaja 

https://youtu.be/Uyibgtz9DZk 

 

Scleroderma and Dentistry (and Dr. Luis personal journey living with scleroderma) 

Dr. Luis Del Castillo 

https://youtu.be/hSjQy0sBpO4


Living With Scleroderma: How you can help your dentist help you-2016 

Dr. Dan Sizemore 

https://youtu.be/OGU_tkLzRHc 


Pain in Scleroderma: Recognizing Its Causes and What Can be Done About It -2018 

Dr. Daniel Furst 

https://youtu.be/wUSa_5pNXVc 

 

Understanding ANA and Antibody Testing for Systemic Sclerosis - A Helpful Guide for Patients – 2021 

Ed Harris: Scleroderma Education Project 

https://youtu.be/0KwOICL2Tl8 


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 

https://youtu.be/klHbHjLNmVQ 

(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 

https://youtu.be/vno1hVO4RLE 


Stem Cell Transplant in Scleroderma-2018 

Dr. Suzanne Kafaja 

https://youtu.be/kSnlDpTBVAw 

 

Therapeutic Plasma Exchange for Systemic Sclerosis: A Guide for Clinicians-2021 

Ed Harris: Scleroderma Education Project

 https://youtu.be/cK5z6SrN7gI 


Lynn Steblecki - Topic: Cosmetic Procedures and Scleroderma and clinical trials and research findings in Stem Cell Face Therapy - 2021

 https://youtu.be/eH07nxDQkQQ

 

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

https://youtu.be/N6k9QPUE-2E


Caregiving During Challenging Times- 2021

Ginny Maril Ph.D.

https://youtu.be/AdyKWfmZ1p0


Happy in the Now; Living Well in Difficult Times - 2020

Dr. Kathy Gruver

https://youtu.be/NpWt8ODfD68


Navigating the Rough Waters of Today: families can be strong vessels! 2020

Elaine Furst RN

https://youtu.be/NZ0aSwUyciA


Caregiver Panel - Caring for a Loved One with Scleroderma - ARMC Patient Education Day- 2018

Panel: Pat Guerre, Chris Hulstrom and Pat Major

https://youtu.be/u3FDjkDpl1Q


Caregiver Panel - Caring for a Loved One with Scleroderma - UCSD Patient Education Day -2018

Panel: Emmanuel Munda, Martha Soto and Scott Noel

https://youtu.be/iyTNa3OXmHk


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.

https://youtu.be/fntOmp03bvY


Disability:

Documenting Disability: Navigating the Social Security and Supplemental Security Income Claims Process -2020

Speaker: California Licensed Attorney: Megan DiTolla. 

https://youtu.be/mUKkcFb0Sh8



Patient Advocacy:


The Challenges Scleroderma Patients Face When Admitted to the Hospital - 2020

Dr. Susan Nyanzi

https://youtu.be/qi1txY5sZbo


The Importance of a Patient Advocate - 2018

Sandy Thigpen

https://youtu.be/U9n3c09dn7s


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

https://youtu.be/Dw86NaKGOds


The Latest Updates in Scleroderma Clinical Trials - 2018

Dr. Jonathan Mills

https://youtu.be/BTVL8w8g90o


The Upside and Downside of Participating in a Clinical Trial - 2017

Elaine Furst

https://youtu.be/nhiE-9zg7eE


Scleroderma and Covid-19:


Scleroderma and Covid-19, New Variant(s) and what you now need to know - 2022

Dr. Daniel Furst

https://youtu.be/eOChFFxINJs


Covid-19 Vaccines, New Variants and Research Findings – Mid 2021

Dr. Daniel Furst

https://youtu.be/7GZLJRLZaxk


COVID19 Testing & Vaccination – Early 2021

Dr. Daniel Furst

https://youtu.be/MkgsJF1-6eA


COVID19: Ever changing: treatments, vaccinations and telemedicine – 2020

Dr. Daniel Furst

https://youtu.be/lfQzlCDraGA


Podcast:


Guest: Dr. Luis Del Castillo, Scleroderma Warrior and Doctor of Dentistry – Feb 2021

https://youtu.be/Se6gzG2OJIA


Guest: Dr. Susan Nyanzi Returns – Mar 2021

https://youtu.be/xQg3rUHAHGI


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

https://youtu.be/MyAWIYyRvwo


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

https://youtu.be/z3M9S2YnJog


Guest: Lynn Steblecki - Aug 6 2021

https://youtu.be/fz6vrQLGWRU


Guest: Dr. Brett Thombs of the Scleroderma Patient Intervention Network (SPIN) Oct 15, 2021

https://youtu.be/gF15-Scrofw


Guest: Scleroderma Australia Takes the Icy Hands Challenge Special

https://youtu.be/_9YuhITe9G4


Guest: Dr. Francesco Boin, Dr. Nunzio Bottini and study coordinator, Marianne Bernardo from Cedar Sinai's Scleroderma Center of Excellence - Jun 17, 2022

https://youtu.be/QsH6t4YTq7s


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

https://youtu.be/QT2XL3TYOmc


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: 

https://youtu.be/bl5kO9ROJ8M


2021 Southern California Virtual Stepping Out to Cure Scleroderma (Long Version) :

https://youtu.be/5-hAwGm_f_c


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) :

https://youtu.be/5eyZyI-zdng


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

https://youtu.be/A4Y3n1Vk-8g


Board Member of the Scleroderma Foundation of California; Joel Cherman takes the Icy Hand Challenge - 2021

https://youtu.be/upbRpmbNL64


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. 

https://youtu.be/8jRntTbkqkg


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.

https://youtu.be/tXuDbBNi12M

THANK YOU TO OUR SponsorS and partners

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Scleroderma Foundation of California

8929 S. Sepulveda Blvd. Suite 401

424-227-6475

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