A Monthly Newsletter for the PSC Community
From CEO and Founder Ricky Safer
Message to the PSC Community
During these unprecedented times amidst the COVID-19 pandemic, we are all struggling to deal with the abrupt halt to our everyday lives while trying to work out a "new normal" that works for each of us and our families. As PSC patients, the feelings of uncertainty and isolation are far from being new to us. Yet, the compulsory sheltering-in-place adds a surreal and intensely extreme dimension to our life. As rare disease patients, we are repeatedly reminded of the heightened risks we face with COVID-19 and the extreme caution we must exercise. We feel committed, at PSC Partners, to continue to help our community and to find positive strategies for coping and for taking charge of our anxiety and fears. We will work together to stay educated about COVID-19 and to remain connected with each other virtually.
Office Closed, but PSC Partners is Open
A month ago, we temporarily closed the PSC Partners office, and our staff is working remotely. Please know that we are diligently working out the logistics to communicate more effectively with you, and that the unexpected changes brought about by COVID have slowed down our efficiency. We continue to fulfill our mission by keeping up with all our programs, though some are switching to a new online format. If we don
t get back to your emails or calls as quickly as you would like us to, please know that we are doing our very best.
Sadly, due to the coronavirus epidemic, for the first time ever, we had to cancel our annual patient/caregiver conference that was planned for April 24-26 in Denver. Following a full year of preparations, having to cancel our much-anticipated annual conference was a major disappointment for us, as well as for all the attendees we have been hearing from. Mark your calendars for the 2021 PSC Partners Conference in Boston, MA, June 11-13, 2021.
|Sending smiles until we meet again.
Virtual Learning In Planning Stages
There is no way to capture the magical feeling and the sense of empowerment we experience when our community gets together for our annual weekend. We know that we cannot recreate that special feeling of togetherness, but we are working towards offering you the educational component of the conference virtually, so that everyone in our community can have access to the presentations.
We had originally planned to hold these virtual meetings close to the conference date but had to move the majority of our webinar series forward to later this year, as we found out that our physician speakers could not be available due to their increased involvement in caring for COVID-19 patients.
First Webinar, Epidemic Psychology with Dr. Schofferman & Dr. Holland, Wed., April 29
We are, nevertheless, pleased to present the first webinar session on Wed., April 29,
at 7 pm EDT. The interactive session will feature Dr. Jerome Schofferman, a retired physician and post-transplant PSC patient, and Dr. Sally Holland, a psychotherapist and PSC caregiver. They will discuss coping with PSC from the perspectives of both patients and caregivers, and introduce us to epidemic psychology, an emerging field of study. We invite you all to participate in this event. Detailed information regarding this online event will be posted soon.
COVID-19 Resources for our PSC Community
Many of us, myself included, are on overload with all the COVID-19 information that is available to us. In an effort to try to filter out the most important information that affects our PSC patients and caregivers, here are the steps that we have taken.
- On March 19, we held a 90-minute webinar entitled: PSC/IBD and COVID-19: What You Want to Know. Our three knowledgeable and compassionate speakers, Drs. Gideon Hirschfield, Josh Korzenik and Jerome Schofferman, offered us their expert perspectives on dealing with the COVID-19. Click here to view the webinar, which includes a lively Q&A session.
- We have created a page on our website which is dedicated to COVID-19 articles and resources. We will try to keep it updated as new information becomes available. Click here to visit the site.
Email PSC Partners with Questions
- If you have further questions about COVID-19 and PSC, feel free to send them to us at firstname.lastname@example.org. We will ask our physician experts to send us responses which we will post on our COVID-19 webpage.
- Since the situation is constantly changing, on a daily basis we are posting coronavirus articles of interest to our community on our various social media sites. Facebook Twitter Instagram
You're Not Alone Zone (#YNAZone)
To try to keep our community in closer touch with each other, we have recently launched the You're Not Alone Zone (#YNAZone). Watch social media for the bright green rectangle. We will have messages and ideas for ways to stay in touch. We may be separated, but we're not alone.
Peer Group Support Sessions
- We are working on a plan to hold future peer sessions in Zoom rooms. Our pilot session will be a Teen Hangout on April 23. Watch your email and the PSC Partners social media pages for more information.
Although much important PSC research worldwide has been paused due to movement restrictions, we are staying in touch with academic researchers, pharmaceuticals and biotech companies that are involved with PSC research. We will keep you updated as we learn more. Click here for updates on PSC Partners-supported research.
Encouraging COVID-19 Collaborations
On a more pressing timeline, we are encouraged to see so much collaboration and innovation taking place internationally, as the private and public sectors work together to create and test future vaccines and possible treatments for COVID-19. Scientists and governments are sharing information. Private foundations are adding funding to support researchers and drug developers. We are seeing some examples of politics being put aside. As patients in the high-risk category, we will watch these developments closely, while knowing that this is, unfortunately, a slow process that will probably take twelve to eighteen months or more.
Suggested Ways for Our Community To Help During This Time
Everyone in our PSC community has a potential role to play in helping us through this crisis and in rising to the challenge.
- Take care of your health and the health of your family. Continue to follow the advice of our medical experts about taking protective measures, from social distancing and washing hands to exercising daily, eating as healthily as possible, and getting adequate sleep. Don't ignore your mental health.
- Stay informed about the coronavirus and its impact on you as a PSC patient. Listen to the advice you heard on our webinar and visit our COVID-19 webpage in addition to keeping up with reliable news programs and sites. If you have any doubts or concerns about the information you encounter, please contact your medical professionals for more information.
- Reach out to patients and caregivers in our community, as we all are feeling the stress of this added isolation and anxiety.
- If you haven't yet joined the PSC Partners Patient Registry, please do so now when you are at home with some time on your hands. This is an easy yet essential way to help us advance PSC research. Click here for more information and to register.
- Take part in developing future PSC research! We are aiming to compile crucial data from patients and caregivers in preparation for future PSC research studies. Be on the lookout for surveys PSC Partners will be sending out to our community. We are hoping that you will all be ready to complete these questionnaires!
Thank You to Medical Providers and Other Essential Workers!
I want to personally thank all the medical professionals who are putting their lives on the line every single day to keep this pandemic under control. I am humbled by their dedication and by the tireless work of all those who are providing us essential services and who are on the frontlines.
Hugs to All
Sending virtual hugs to all our patients and caregivers who make PSC Partners the amazing community that we are.
I love this quote from Maya Angelou:
ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."
Stay safe, follow social distancing, and be healthy! Together in the fight, whatever it takes!
The mission of PSC Partners Seeking a Cure is to provide education and support to PSC patients, families and caregivers and raise funds to research causes, treatments and cures for primary sclerosing cholangitis.