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THE DUCT
A Monthly Newsletter for the PSC Community
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We encourage everyone to get involved in the ROADMAP Initiative. Join us for upcoming, interactive webinars. Complete a brief, important survey. Help us name the ROADMAP mascot. Get more information below, or visit the ROADMAP Initiative page on our website.
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Join Us for Upcoming Webinars as Part of the
PSC Partners
ROADMAP Initiative
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In-Depth...Engaging...
Thought-Provoking
Wednesday, June 16, 6-7:30 p.m. MT
ROADMAP 101: Let’s Talk PSC Symptoms
Everything you don’t have time to tell your doctor!
Describe your symptoms, and learn how they will inform successful drug development.
ROADMAP 101: Let’s Talk PSC Symptoms will begin with a General Session focused on PSC patients and caregivers. This General Session is open to everyone including PSC patients, caregivers, friends, researchers, pharma, and others. Breakout Rooms in the second half of the program are organized by PSC symptoms and are for PSC patients and caregivers only.
This is your opportunity to briefly share how a certain symptom affects how you feel and function, or what concerns you have about this symptom. At the end of this session, we will share this de-identified information to guide research strategy and drug development.
Goals for this Webinar
Generate a Collective Understanding of the Diverse PSC Patient Experience
•A deeper understanding of living with PSC symptoms
•Clarification of changes in symptom severity and/or frequency in response to treatments
Educate Patients About
•What the gaps are in understanding symptoms
•How symptoms relate to drug development
•How symptoms, daily function, and quality of life are captured in PRO (patient reported outcomes) tools, which will be discussed in this webinar
We hope attendees will leave feeling empowered to ask questions, share experiences, and help guide discussion of symptoms and outcomes in the ROADMAP Webinar 201, which will be in July.
Thursday, July 8, 6-7:30 p.m. MT
ROADMAP 201: Developing a PRO Tool with the
PSC Patient Voice
Come to the table to help us formulate a more informative
a PRO (patient reported outcome) tool for PSC
Mark your calendars for this event.
The registration link for the July webinar, and more information, will be posted soon on the EVENTS page of our website.
(Session 101 is not mandatory for attendance at Session 201.)
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Complete a Brief Survey
ADD YOUR VOICE to
ROADMAP Initiative Research Data
On the survey,
you will be asked to:
Share with us your three biggest concerns that you would like to see studied in future PSC research, and send us questions or comments regarding the ROADMAP Initiative.
The survey is short and simple but SO important as we work together to find
treatments and a cure for primary sclerosing cholangitis (PSC).
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Conference Dates and Location Set for
2022 PSC Partners Conference
June 2 - 5, 2022
Boston, MA USA
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It's with great pleasure that we announce the dates of the 2022 PSC Partners Conference, in collaboration with Dr. Josh Korzenik, Brigham and Women's Hospital, and Dr. Dan Pratt, Massachusetts General Hospital.
We hope you'll join us in Boston, Massachusetts, Thursday, June 2 - Sunday, June 5, 2022.
We are still formulating plans for the conference kick-off, which may start early in the day on Thursday, June 2, so we recommend holding off on making plane reservations until the agenda is finalized.
A link to make reservations at the conference hotel, the Burlington Marriott, will be available ten months prior to the conference. A special rate has been negotiated. Please don't reserve a room until our special conference link is live.
Watch our website, newsletter, and social media for conference updates.
See you soon in Boston!
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APPLICATIONS ARE NOW BEING ACCEPTED FOR THE PSC PARTNERS SEEKING A CURE
2021 RESEARCH GRANTS PROGRAM
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Applications are now being accepted for the PSC Partners research grants program. Grants are offered to scientists conducting research for PSC and closely associated diseases.
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If you have submitted a LOI for the 2021 grant cycle, you should have received a confirmation of receipt. If you have not, please email contactus@pscpartners.org.
Questions? contactus@pscpartners.org
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Talk to Doctor Before Removing Masks
PSC Patients May Still be at Risk, Even After Vaccine
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There are questions about the antibody response to the mRNA COVID-19 vaccines (Pfizer and Moderna) in the PSC patient population. The clinical trials for COVID-19 vaccines included few subjects with chronic liver disease, and the vaccine response is not known for these populations. A recently published study on solid-organ transplant patients, which included liver transplant patients, has raised additional questions about antibody response to the COVID-19 vaccine for those PSC patients taking immunosuppressive drugs for IBD, AIH, and other indications.
No such study, yet, exists specifically for PSC patients. Stay tuned for further news about how PSC Partners is working to get answers to these questions. Please watch your email, social media, and future newsletters for updates.
As always, PSC Partners does not give medical advice.
Please contact your medical provider(s) with questions and concerns.
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JOIN THE WALK83.01 TO FUND RESEARCH FOR PSC
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Who is ready for a challenge?
Warmer weather is here, and our world is opening up, again, which has all of us at PSC Partners excited! We hope you’ll join the PSC Partners staff and board of directors on our mission to raise PSC awareness and funds by walking 83.01 miles (133.5 km) between July 1- September 30, 2021. Why did we choose 83.01 as a goal? Because the unique disease code for primary sclerosing cholangitis (PSC) is K83.01. Get more information about the PSC ICD-10-CM code on our website.
For this fundraising event, walk as an individual or gather a team, and consider wearing PSC Partners gear. Check out our shop. A special WALK83.01 t-shirt is in the works. We'll let you know when it's ready.
Funds raised via this unique event will support PSC research! Donations can be made per mile/km or given in one lump sum. $83.01 is the suggested donation, but feel free to raise more or donate whatever amount feels comfortable to you.
If you don’t want to walk, or are unable to, you can complete the event in a different way. You may choose to paddle, peddle, rollerblade, run, or choose another form of exercise. If movement is difficult, how about doing 83 random acts of kindness, writing 83 postcards to family & friends, reaching out to 83 people in the PSC community, making 83 friendship bracelets with your kids, or asking someone (or a team of friends/family) to complete the 83.01 on your behalf? Be creative! Feel free to combine any of the ideas above, and/or complete this unique fundraiser in a way that is fun and doable for you! If you have any cool ideas to share, post them on social media to help others participate.
The registration link will be live soon. Watch our EVENTS page, social media, and future newsletters for updates.
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ZoomRooms
Are a Great Way To Make
Peer-to-Peer
Connections!
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Tues., June 15
ZoomRoom for Caregivers/ Spouses/ Parents
6 p.m. MT
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Wed., June 29
ZoomRoom for PSC Teens ages 13-20
6 p.m. MT
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Wed., July 14
ZoomRoom for Adult PSC Patients
ages 18+
6 p.m. MT
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ZoomRooms are not recorded, and are intended as safe, open forums.
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Visit the EVENTS PAGE on our website for all scheduled ZoomRooms and other events of interest to our community.
Help us keep our community informed by sending relevant events to PSC Partners! If you have an event you think should be added to the calendar, send information to contactus@pscpartners.org. Events will be screened for applicability to our community.
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PSC & Diet, Understanding IBD/PSC Relationship, and MORE
A Discussion with
Dr. Josh Korzenik
In episode 23, Host Niall McKay talks with Dr. Josh Korzenik, gastroenterologist, director of the Resnek Family Center for Primary Sclerosing Cholangitis Research, and director of Brigham and Women’s Hospital Crohn’s and Colitis Center at Harvard Medical School.
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"In order to understand PSC, we need to understand (IBD). That's the best clue we have, and in order to understand (IBD), we need to understand PSC. We think that (they) hold valuable insights for the other," says Dr. Korzenik.
PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Media Producer Niall McKay. Each month, this podcast explores the latest research and knowledge about PSC. From patient stories to the latest research updates from PSC experts to collaborations that are necessary to find better treatments and a cure, this podcast has it all! Check out all episodes here.
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Six experts addressed a variety of topics including:
- Josh Korzenik, MD: ROADMAP, the PSCP-Organized International Collaborative Research Network, and 2022 Conference
- Chris Bowlus, MD: PSC Partners’ Registry
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Veronica Miller, PhD: History of Patient Advocacy in Drug Development, and more.
Click ROADMAP graphic in black box above to listen to the full recording.
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Each month, we highlight a video from the growing collection on our YouTube channel.
This month's selection is:
ROADMAP Initiative Kick-Off Webinar
In preparation for the next webinar in our ROADMAP Initiative series (Wed., June 16 - See information above.), we recommend watching the recording of the kick-off webinar, which was held on April 20th.
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PSC Partners Canada Needs Your Help! |
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PSC Partners Canada is holding an online auction June 11-20, 2021, to fund research grants for novel PSC research, and we are looking for auction items to offer. This auction can be a great success with community support.
- We would love to offer getaways to vacation spots (cottages, homes, etc.) near or far. You could be present and offer a bed and breakfast at your home, or you could offer your home to a specific number of guests for a few days or a week. Canadians love to travel to the USA and other countries, and, hopefully, COVID-19 will be under reasonable control soon.
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Many of you have friends and family in Canada. If they have connections to any businesses that might be interested in offering a donation, please let Sandy VanOstrand know. (Contact information below.)
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Closer to the date, we will be sending out information about how to access the PSC Partners Canada auction. We hope you'll participate in the auction! Watch our website and social media for a live link soon. Share with your family and friends.
The timeline is short. The cutoff for donations is June 1, 2021. Please contact Sandy with any questions or donations, sandravanostrand@gmail.com.
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Welcome to Sandi's
Circle
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Sandi Pearlman Talks about the PSC Partners Conference
In the book Sandi's Journey, there are numerous quotes from Sandi about the PSC Partners Conference. Given that the 2022 conference date has been set, and we're all eagerly anticipating the weekend, we thought we'd share one of Sandi's conference pearls here.
"At the conference, it doesn't matter if you're 13 or 33, 40 or 75, we're all the same, even in our differences, because we choose, on a level not even our subconscious recognizes as decision making, to recognize each other. During sessions, we devour information and look to experts to fill gaps in our knowledge, or teach us something new. Out of sessions, we sing (boy do we ever), and we shop, and we savor each moment, because we know how fleeting they are. Those of us who normally sleep 18 hours a day, or can't get up off the couch, are suddenly going out to get sandwiches at 2 a.m., because we can't bear the thought of missing a moment. We literally exhaust ourselves for that one more second to spend together."
We hope you will join us at the 2022 PSC Partners Conference, June 2-5, Boston, MA. More information will be provided in the coming months.
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Folks who have been in the PSC Partners community remember Sandi Pearlman as a bright, positive light. Her insight, humor, and supportive presence were a real gift to those who knew her.
In this space, we share words of encouragement from Sandi and others.
If you have something to add to Sandi's Circle, send it to contactus@pscpartners.org.
Due to space limitations, not all submissions can be added, but we invite everyone to use this space to encourage folks in the PSC community.
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WE NEED YOU TO BE PART OF THE
MENTOR PROGRAM!
Even if you've think you are already part of the program, you need to fill out the online survey. It's fast and easy!
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The PSC Partners Mentor Program provides much-needed support for people whose lives have been impacted by primary sclerosing cholangitis (PSC).
Volunteer to Be a Mentor!
We are in need of mentors for our year-round, peer-to-peer support program. If you have attended at least one PSC Partners Conference and want to give back to the community by becoming a mentor, you can be a mentor and make a big difference in someone's life!
You can be a mentor if:
- You have a desire to help another person with their PSC journey, and
- You attended at least one PSC Partners Conference.
We need EVERYONE who is interested in being a mentor, including folks who have mentored others in the past, to fill out a very brief survey. It takes just a minute of your time, and ensures that your updated information is included on our new online mentor list. Please take a minute to complete the survey now. Thank you!
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DOES YOUR EMPLOYER HAVE A MATCHING GIFT PROGRAM?
YOUR CONTRIBUTION TO PSC PARTNERS COULD BE DOUBLED!
Did you know that many companies match employee gifts to charitable organizations and/or volunteer time? It's true! If your place of work matches charitable donations, don’t forget to tell them about your gift to PSC Partners. This is a terrific way to multiply the impact of your donation!
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Our Mission: To provide education and support to PSC patients, families and caregivers and raise funds to research causes, treatments and cures for primary sclerosing cholangitis (PSC). |
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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