Scleroderma Foundation Northern California Chapter

Scleroderma Foundation Northern California Chapter

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Did you know that 23andMe is conducting a scleroderma genetic study that YOU can participate in too!!!

Not only will your questionnaire and saliva sample go into their database for study, but you will also get your 23andMe profile for FREE!

Here is the link to participate:
https://www.23andme.com/systemic-sclerosis-study/

Additional helpful information below:

Genetics & Systemic Sclerosis
Systemic sclerosis is a form of scleroderma that can not only affect the skin and underlying tissue, but also the internal organs. In this study, 23andMe researchers aim to learn more about the genetics of people living with the disease in order to search for clues that could ultimately lead to the development of better treatments.

By choosing to participate in this research, YOU have the power to potentially make a difference in the lives of people living with this condition. If not now, for the future.

Our Goal
At 23andMe, we are committed to advancing research through the power of genetics. Our goal for this specific study is simple–we want to improve the lives of people living with systemic sclerosis by developing an effective drug treatment. But reaching that goal is not as simple. Your participation is vital.

Why your participation is so important
Systemic sclerosis is considered a rare disease. And because rare diseases affect fewer people, a lack of market incentive often makes treatments just as rare. We are hoping to change that. Through our study, people living with this condition can provide genetic information and invaluable insight that can bring us closer to future treatment discovery. Your time and effort are pivotal in achieving this goal. We know living with this disease, on top of daily life in these times, brings about its own struggles. So we cannot thank you enough should you choose to participate.

Eligibility
You are eligible to participate in this study if you:

Have been diagnosed with systemic sclerosis
Are 18+ years old
Live in the US

How It Works
Participation in the study is simple and can be done entirely from home. If you are eligible, you will receive a 23andMe Health + Ancestry kit at no cost. After providing a saliva sample, you will be invited to answer survey questions about your overall health and your experience with systemic sclerosis.

Learn more about the 23andMe Health + Ancestry Service here and read important test information here.

Who We Are
The name 23andMe refers to the fact that human DNA is organized into 23 pairs of chromosomes. Founded in 2006, it is our mission to help people access, understand and benefit from the human genome. With the help of our 23andMe community we believe we can accelerate research and make an impact with our genetic data

If you choose to consent to participate in this study you will be asked to agree to the sharing and transfer of your individual-level genetic and self-reported Information to qualified third-party collaborators including advocacy organizations, clinical research centers, pharmaceutical companies and patient registries and/or databases. Your data will be stripped of identifying information, such as your name and contact information. If you agree, your de-identified individual-level data may be accessible by other qualified researchers for the purpose of research on autoimmune diseases like systemic sclerosis.
Hi everyone! Looking to get involved in the NorCal chapter...I'd be open to helping with this FB page and getting organized.

Please contact us at: [email protected] or (916) 832-1102 The Scleroderma Foundation: The National Resource for People with Scleroderma

The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends.

It was formed January 1, 1998, by a merger between the West Coast-based United Scleroderma Foundation and the East Coast-based Scleroderma Federation. Join Us! We are a nonprofit membership organization with IRS 501(c)3 status, which means your donations to us are tax-deductible.

08/16/2020

Hello everyone,
I haven’t posted in a while because I am now on hospice care (and not for scleroderma). It has been my pleasure to be a part of this foundation, 8 years ago I volunteered to manage the group’s page because I loved sharing information and connecting. However, I am no longer able to do that anymore. Anyone interested in doing that work please let Rachel know. Thank you 😊

sclerodermanews.com 06/28/2020

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the daily lives of those with rare diseases

sclerodermanews.com Alexion Charitable Foundation has awarded $1.1 million to NORD and Global Genes to support rare disease patients amid the COVID-19 pandemic.

healio.com 06/17/2020

Uncovering gastrointestinal involvement in systemic sclerosis requires 'asking the right questions'

Uncovering Gastrointestinal Involvemente in Systemic Sclerosis

Healio News, May 26, 2000

Tracy Frech, M.D., M.S., Director of the Systemic Sclerosis Clinic at the University of Utah Hospital, was quoted in a Healio Rheumatology article, written by Robert Stott, regarding gastrointestinal involvement in systemic sclerosis.

Dr. Frech said, “It is the most common involved internal organ in systemic sclerosis, and can be the presenting feature in 10% of our patients. During the course of an illness, 95% of systemic sclerosis patients will complain of gastrointestinal symptoms. Additionally, 6% to 12% of our patients will die from gastrointestinal tract involvement.

healio.com Although rheumatologists are more attuned to the skin symptoms associated with systemic sclerosis, there should be a “heightened awareness” of gastrointestinal involvement, which is highly prevalent among this patient population and can precede skin manifestations, according to data pres...

sclerodermaaware.org 06/05/2020

Scleroderma Aware

2020 Awareness Month Intro
June is Scleroderma Awareness Month!

June is Scleroderma Awareness Month—30 days dedicated to spreading the word and working toward a cure. Starting June 1, meet the many amazing faces of scleroderma and get to know their inspiring stories.

Visit sclerodermaaware.org to access the social media toolkit to bring attention to this rare disease.

sclerodermaaware.org Take the pledge to tell at least one person about scleroderma this month. Then share it and challenge friends to do the same.

youtube.com 05/29/2020

COVID-19 - YouTube

Scleroderma Education Videos on YouTube

A series of educational videos relating to scleroderma and COVID-19 are posted on the Foundation's YouTube channel under a play list titled "COVID-19."

The most recent addition is the recording of the April 24 webinar, Balancing your Immune System: a Special Webinar on Nutrition for Scleroderma Patients, featuring Elizabeth Volkmann, M.D., M.S., University of California, Los Angeles.

youtube.com Webinars regarding COVID-19 (coronavirus) and scleroderma

05/19/2020

2016 - New Orleans - Scleroderma Vascular Disease: Much More Than Raynaud's

Scleroderma Vascular Disease: Much More than Raynaud

Video Recording, 2016 National Patient Education Conference

Watch a presentation by Lee Shapiro, M.D., Community Care Rheumatology, Saratoga, N.Y., recorded during the 2016 National Patient Education Conference. Dr. Shapiro points out that microvascular disease is more ubiquitous in scleroderma than commonly appreciated. Pulmonary hypertension, Raynaud, and scleroderma renal crisis are all well recognized vascular complications of the disease. This talk builds a case for vascular disease as the basis of many other manifestations, including gastrointestinal disease and calcinosis, and discusses angiogenesis as another possible treatment approach.

2016 Doctor of the Year, Dr. Lee Shapiro, builds a case for vascular disease as the basis of many other manifestations, including gastrointestinal disease an...

05/10/2020

A Beautiful Place: Physical Health in Scleroderma Through the Mind Body Garden

A Beautiful Place: Physical Health in Scleroderma Through the Mind Body Garden

Watch a recording of the May 1, 2020, webinar presented by Lesley Ann Saketkoo, M.D., M.P..H., Tulane University Medical School, regarding strategies to improve health through physical mindfulness practices that specifically target health and well-being while living with scleroderma during the time of COVID-19.

Collaboratively sponsored by the Scleroderma Foundation, the Scleroderma Research Foundation, and Scleroderma Canada.

A Beautiful Place: Physical Health in Scleroderma Through the Mind Body Garden with Lesley Ann Saketkoo, M.D., M.P.H., recorded May 1, 2020.Learn strategies ...

youtube.com 05/02/2020

COVID-19 - YouTube

YouTube logo Little Guy overlay
Scleroderma Education Videos on YouTube

A series of educational videos relating to scleroderma and COVID-19 are posted on the Foundation's YouTube channel under a play list titled "COVID-19."

The most recent addition is the recording of the April 24 webinar, Balancing your Immune System: a Special Webinar on Nutrition for Scleroderma Patients, featuring Elizabeth Volkmann, M.D., M.S., University of California, Los Angeles.

youtube.com Webinars regarding COVID-19 (coronavirus) and scleroderma

sclerodermanews.com 04/27/2020

NORD Offering Financial Aid to Rare Disease Families Hurt by COVID-19

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to support critical, non-medical needs. The program is designed […]

The post NORD Opens COVID-19 Financial Aid Program for Rare Disease Community appeared first on Scleroderma News.

sclerodermanews.com The COVID-19 Critical Relief Program by NORD offers up to $1,000 to people with rare diseases needing help with non-medical costs, like utility bills.

sclerodermanews.com 04/18/2020

NORD's Advice About COVID-19: You're Stronger Than You Think

Covid 19

sclerodermanews.com Read about NORD's March 31 webinar, which was aimed at helping rare disease patients survive the coronavirus COVID-19 pandemic.

meet.lync.com 04/12/2020

Skype for Business

Living with Scleroderma: Ways to Cope with Anxiety and Isolation

Video Forum: April 13, 2020, 2 - 3 p.m. Eastern Time

To help individuals affected by scleroderma during this time of social distancing and staying at home, the Foundation's Tri-State Chapter and the Hospital for Special Surgery's (HSS) Scleroderma, Vasculitis and Myositis Center is hosting a free video forum via Skype.

Featuring Juliette Kleinman, L.C.S.W., A.C.S.W., senior social work manager, HSS, and Susan Rodriguez, L.C.S.W., social worker, HSS. Moderated by Jessica K. Gordon, M.D., M.Sc., associate professor of clinical medicine, HSS.

SKYPE MEETING

meet.lync.com

zoom.us 04/08/2020

Welcome! You are invited to join a webinar: STaY Breathing!. After registering, you will receive a confirmation email about joining the webinar.

STaY Breathing!

Scleroderma Telehealth Yoga Breathing (STaY Breathing!) is the telehealth version of the ongoing Gentle Yoga & Yogic Breathing (GYYB) program for individuals who have scleroderma. In the current environment of COVID-19, it is important to minimize exposure, which is especially relevant to those who have scleroderma. At the same time, keeping up with good exercise is the key to better health and symptom management. With this in mind, Dr. Sundar Balasubramanian is transforming the GYYB program into the telehealth mode so you can practice from home. Attendance is restricted to individuals with scleroderma. There is no charge to join. Voluntary donations will be accepted.

You may choose to attend one or more webinars from the following dates, all occur at 11 a.m. Eastern Time:

April 4, 11, 18, 25
May 2, 9, 16
(Sorry I posted this a little late)

zoom.us

04/05/2020

YouTube

Recording of March 27 Webinar, "Staying Well During COVID-19"

Watch the recording of the March 27 webinar, Staying Well During COVID-19, with Tracy Frech, M.D., M.S., director of the Systemic Sclerosis Clinic, University of Utah.

Presented by the Scleroderma Research Foundation, the Scleroderma Foundation, and Scleroderma Canada.

https://www.youtube.com/watch?v=8Qrn9yzfRnw&feature=youtu.be

03/29/2020

Videoforum Scleroderma and COVID 19

Video Recording of March 21 Video Forum on COVID-19 & Scleroderma

Watch the recording of that March 21 video forum with five scleroderma experts about COVID-19 and its impact on individuals who have scleroderma.

Maureen Sauvé: SPIN Patient Advisory Board and Steering Committee.
Dr. Janet Pope: Western University, London, Ontario
Dr. John Varga: Northwestern University Scleroderma Program, Chicago, Illinois
Dr. Donald Sheppard: McGill University, Montreal, Quebec
Dr. Brett Thombs: McGill University, Montreal, Quebec; SPIN

Presented by SPIN (Scleroderma Patient-centered Intervention Network) in sponsorship with the Scleroderma Society of Ontario, Scleroderma Canada, the Scleroderma Research Foundation, and the Scleroderma Foundation.

Scleroderma & COVID-19: A Conversation with the Experts VIDEOFORUM, Recorded March 21, 2020 Five scleroderma experts answer questions about COVID-19 and its ...

03/21/2020

A Message from Scleroderma Foundation CEO, Robert J. Riggs

Dear Foundation Members, Friends and Supporters:

We are all being advised and required by government authorities to change our regular routines, which impacts every aspect of our lives. The interconnectedness of our world, our nation, and our communities has, perhaps, never been more evident than now. Yet, in these challenging times, we are reminded that people throughout history have overcome adversity by forgoing what is normal daily activity and embracing changes and sacrifices that will ultimately benefit us all.

The Scleroderma Foundation is with you through this difficult period as we explore and employ new ways to meet our mission. We will be enhancing our online educational programs; continuing our work to advance awareness of scleroderma and its impact on patients and families; and we remain constant in our commitment to research. Our 2020 research grants, and those awarded in previous years that are already in progress, continue to be funded in order to maintain the momentum we see in scientific advancement.

The leadership of our Medical & Scientific Advisory Board is in daily contact with the Foundation’s national office team to ensure that the best information and emerging knowledge is available to our community regarding the COVID-19 pandemic and how best to protect the most vulnerable of those in our scleroderma family. Our global scleroderma patient organization partners are also working in concert to share information.

Changes are required of us all. Foundation support group meetings, patient education events and fundraisers have been cancelled at least through the end of April, and we will communicate further changes as required in this critical time. It’s important that our community take steps now to ensure the safety of ourselves and our families. Please read and follow the guidelines we’ve updated today.

Rest assured, the work of the Scleroderma Foundation continues much thanks to our volunteers, chapter and support group leaders, our national office team, the National Board of Directors and the Medical & Scientific Advisory Board, all of whom are committed to advancing our mission.

Thank you for your ongoing support as we face these challenging times together.

Gratefully,

03/14/2020

Dear Friends:

To protect the health of individuals who have scleroderma, the Scleroderma Foundation has canceled its 2020 National Patient Education Conference scheduled to take place July 17-19 in Bellevue, Washington.

This action is deeply disappointing for our entire community; however, it is absolutely necessary. As we all know well, individuals with scleroderma, particularly those who have systemic sclerosis, are immuno-compromised and have a heightened risk for the worst-case symptoms of the coronavirus (COVID-19).

This decision was taken after thorough review of information available through public health agencies, primarily the Centers for Disease Control & Prevention and the State of Washington Public Health Department.

In lieu of the eagerly anticipated in-person educational conference and the unique and essential personal connections it provides; the Scleroderma Foundation is developing creative, alternative programming to be announced later.

A full refund of conference fees will be given automatically next week (March 16-20) to all who are currently registered to attend.

Hotel room reservations will not be canceled automatically. If you reserved a room, you must contact the hotel independently to cancel the reservation to avoid financial obligation.

We are pleased to announce that the conference will return to Bellevue, Washington in 2022.

sclerodermanews.com 03/10/2020

Cannabidiol Therapy, EHP-101, for Scleroderma Put on FDA Fast Track

EHP-101, an oral therapy based on cannabidiol (CBD), has been placed on fast track development by the U.S. Food and Drug Administration (FDA) as a potential treatment of systemic scleroderma. This designation is intended to expedite the development and review of new therapies that fill an unmet medical need in serious illnesses.

sclerodermanews.com Emerald Health is moving to open a Phase 2 study of oral EHP-101, given daily at low and high doses for about three months, in 36 scleroderma patients.

03/10/2020

Palo Alto Support Group on second Saturdays of the month is cancelled for March.

cdc.gov 03/06/2020

Coronavirus Disease 2019 (COVID-19)

Coronavirus Precautions

The Scleroderma Foundation takes seriously the threat the Coronavirus presents to individuals living with scleroderma. There is an increasing likelihood of a significant outbreak of the virus in the United States, and we wish to provide our community with reliable information from qualified sources. Below are two links to information that you may find helpful. The first is from the United States Centers for Disease Control that includes Frequently Asked Questions. The second link is from the American Thoracic Society that details information for those who have respiratory complications.

Please read this information carefully and contact your physician at the first signs of feeling ill.

Centers for Disease Control FAQ https://www.cdc.gov/coronavirus/2019-ncov/faq.html/

American Thoracic Society Patient Resources

cdc.gov Coronavirus disease 2019 (COVID-19) is a virus (more specifically, a coronavirus) identified as the cause of an outbreak of respiratory illness first detected in Wuhan, China.

rarediseaseday.org 02/26/2020

Rare Disease Day 2020 - 29 Feb

Rare is Strong Ever Day

February 29 is Rare Disease Day. You can increase awareness and understanding of rare diseases, including scleroderma, by sharing these messages on your social media accounts.

72% of rare diseases are genetic
70% of genetic rare diseases start in childhood
300 million people live with a rare disease worldwide
Over 6,000 different rare diseases

Visit the Rare Disease Day website to download social media graphics, including a Facebook Frame and Twibbon.

rarediseaseday.org The main objective of Rare Disease Day is to raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a public health priority.

sclerodermanews.com 02/20/2020

Scleroderma Patient Questionnaire Ranks Digital Ulcer Effects, Study Says

New Questionnaire Measures Effect of Digital Ulcers on Hand Function
Feb 12, 2020 07:00 am | Ana Pena, PhD


Researchers have come up with a new, patient-reported questionnaire to measure the impact of digital ulcers on hand function in people with scleroderma. The questionnaire, “Hand Disability in Systemic Sclerosis-Digital Ulcers (HDISS-DU),” was developed using patient interviews and trial data. I

sclerodermanews.com A new, patient-reported questionnaire reliably measures digital ulcers' impact on hand function in scleroderma, a study says.

rarediseaseday.org 02/17/2020

Rare Disease Day 2020 - 29 Feb

Rare is Many

February 29 is Rare Disease Day. You can increase awareness and understanding of rare diseases, including scleroderma, by sharing these messages on your social media accounts.

300 million people live with a rare disease worldwide
Over 6,000 different rare diseases
72% of rare diseases are genetic
70% of those genetic rare diseases start in childhood

Visit the Rare Disease Day website to download social media graphics, including a Facebook Frame and Twibbon.

rarediseaseday.org The main objective of Rare Disease Day is to raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a public health priority.

02/14/2020

Stanford University Rheumatology Clinical Trials
Mark Genovese, M.D. (650) 498-4528

Stanford Rheumatology is seeking adults for the following clinical
trials:
(Will provide additional information regarding any of the studies if requested)

Sarcoidosis
Sarilumab (anti-IL6R) for patients with active sarcoidosis requiring ongoing glucocorticoids.
First 16 weeks is open label and all patients will receive active treatment. Cardiac and CNS
disease excluded, but all other manifestations eligible.

Systemic Lupus Erythematosus

PF-06700841 (anti-TYK2/JAK1) vs placebo for patients with active SLE with inadequate
response to standard therapy. Active CNS lupus or lupus nephritis excluded.
AMG 570 (anti-BAFF/anti-ICOSL) vs placebo for patients with active SLE with inadequate
response to standard therapy. Active CNS lupus or lupus nephritis, or either requiring induction
therapy within past year excluded.

Psoriatic Arthritis
Upadacitinib (JAK 1) in patients with failure to a TNF agent- Phase III trial. Patients will
continue to receive agent in an open label extension.

Rheumatoid Arthritis
Olokizumab (IL-6 Ligand Inhibitor) trial with in patients failing TNF therapy-Phase III trial.
Patients will continue to receive agent in an open label extension for long-term use.
Cadheron-11 mab (anti-synoviocyte therapy) with background TNF in a combination trial in
patients with partial response on TNF inhibition and MTX. Long-term open label extension.
BTK inhibitor trial in patients taking background DMARDs. Phase II Long-term open label
extension
Vagus Nerve Stimulation Device in Patients with Rheumatoid Arthritis who have failed two
different biologic agents. A controlled study of the safety and efficacy of neurostimulation. All
patients will have a device and will be able to have active treatment.

Stanford University Rheumatology Clinical Trials
Mark Genovese, M.D. (650) 498-4528
Systemic Sclerosis
Iloprost—Phase III placebo-controlled trial of IV iloprost for patients with Raynaud’s
phenomenon secondary to systemic sclerosis. Concomitant vasodilators are permitted and
patients may also have digital ulcers.
KD025 (ROCK2 inhibitor) – Phase II placebo-controlled trial for patients with early (< 5 yrs
from first non-Raynaud’s disease manifestation) diffuse cutaneous Systemic Sclerosis.
Concomitant mycophenolate mofetil or methotrexate are permitted. FVC > 50% predict

Videos (show all)

2012 Stepping Out Sacramento
What is Scleroderma?

Telephone

Address


Sacramento, CA
95860

General information

Scleroderma is a chronic and often progressive autoimmune disease in which the body's immune system attacks its own tissues. The disease can cause thickening and tightening of the skin, as well as serious damage to internal organs, including the lungs, heart, kidneys, esophagus and gastrointestinal tract. Scleroderma occurs three to four times more often in women than in men. For some individuals,, scleroderma is a nuisance. For others, it is a life-threatening disease. For most people with scleroderma, the disease has a serious impact on daily life. Although medications can sometimes help, there is no cure yet.
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