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THE DUCT
A Monthly Newsletter for the PSC Community
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Folks from numerous international PSC groups, many of whom are pictured above, have once again been working together to plan Global PSC Awareness Day, October 29, 2022.
Check out the article below to find out how you can help increase awareness for PSC.
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RAISE AWARENESS ON GLOBAL PSC AWARENESS DAY, OCTOBER 29, 2022 |
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Global PSC Awareness Day is right around the corner, and we need your help to educate and inform folks around the world. Here's how you can get involved: |
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RECORD A VIDEO: Record a short video message on your phone saying, "Hi! I'm (first name). Happy Global PSC Awareness Day from (city, state, country)." Email it by Thurs., Oct. 27th, to contactus@pscpartners.org. We will share as many of the recordings as possible via social media on Awareness Day.
EDUCATE ABOUT AN UNMET NEED: This year's theme is UNMET NEEDS IN PSC. What does that mean to you? Let us know in a short written statement or brief recorded video message (under 30 seconds). We'll share as many of the answers as we can on Awareness Day.
WATCH AND SHARE WEBINAR: On Global PSC Awareness Day, attend the virtual webinar with international experts discussing unmet needs in PSC. Once a recording of the webinar is posted, share it with others. Watch Facebook for more information about webinar timing.
HIT THE SHARE BUTTON ON SOCIAL MEDIA: On Awareness Day, share PSC information on social media. An easy way to do that is to hit the share button when PSC Partners and other international PSC groups share fact graphics and videos throughout the day.
SNAP A SELFIE IN PSC PARTNERS GEAR: Wear your PSC Partners gear, or clothing from another PSC organization, on October 29th. Snap a selfie and post it on social media. Remember to tag PSC Partners and use #PSCAware.
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Above are logos from all of the 2021 Global PSC Awareness participants. |
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Thank you to everyone who participated and donated!
OUR SECOND ANNUAL WALK83.01 for PSC
RAISED $135,565.18.
We are overwhelmed with gratitude for our amazing community who came out in droves to support our second annual WALK83.01 for PSC. Thanks to your generous contributions for PSC research, our beaker bubbled up and overflowed. These funds will support two PSC Partners research grants for two years, plus more! What an amazing show of unity and dedication as we work together to find treatments and a cure for PSC. Together, we're going to do it!
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We received this message and adorable photo from the parent of a person with PSC. Thank you!
"(My grandaugher) is celebrating due to all the work the many 'partners' have done to make your (WALK83.01 for PSC) goal a reality! Thanks for working to find a treatment and a cure to help her Dad and so many others!!!
Way to go team!!!!
Amazing work by all of you!!!"
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REGISTER FOR THE NEXT WEBINAR IN OUR
2022 POST-CONFERENCE SERIES
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Embracing Diversity in PSC:
Invitation to Participate in Webinar &
Engage with Community
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As a person with PSC, do you feel you have not received appropriate medical care
or proper attention from the medical system? Do you think you’re not being heard?
Don’t miss our upcoming webinar! Nobody with PSC should feel uncared for or underrepresented. To introduce you to the PSC Partners community and get you involved in our effort to identify and mitigate factors affecting healthcare, we invite you to attend our webinar focusing on diversity, equity, and inclusion in PSC. (See graphic below.) We need your voice! You can help improve treatment and remove barriers to care. No one with PSC should feel alone, unsupported, or left behind.
Join the PSC Partners community! PSC Partners invites you and your family to join our supportive and engaged PSC community. Start by attending this webinar where you will meet our diverse community of patients and others affected by PSC. Learn about PSC Partners support groups, mentorship program, opportunities for education, details about clinical trial participation, and more. Empower yourself and your family to take an active role in your healthcare.
The PSC Partners family can’t wait to meet you and work together to find solutions to improving healthcare for all.
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DRUG DEVELOPMENT,
FDA APPROVAL, and
CLINICAL TRIALS
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Have you ever wondered how treatments for PSC and cholangiocarcinoma (CCA) get approved?
You may have heard phrases like “pre-clinical” or “Phase 2 trial” but wondered what they mean.
In the United States, the Food and Drug Administration (FDA) utilizes an elaborate approval process for all drugs intended to treat diseases or prevent their progression. Their infographic linked HERE provides a high-level overview of all the steps, including:
- Drug development
- Pre-clinical testing
- Clinical studies/trials
- Review of drug labeling
- Inspection of manufacturing facilities
- Approval timeframes, with faster options like Accelerated Approval and Fast Track
- Post-marketing monitoring
CHECK OUT THE TWO VIDEOS BELOW FOR MORE INFORMATION ABOUT
PSC CLINICAL TRIALS AND JOINING THE REGISTRY.
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Science Corner is a new feature in The Duct. In this space, we aim to educate and inform
our community about the science of PSC and PSC-related subjects.
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REGISTER FOR AN UPCOMING
PEER-TO-PEER SUPPORT ZOOMROOM
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PSC Partners ZoomRooms provide peer-to-peer support for our community. People who have attended in the past keep coming back, because they know these virtual gatherings are a great place to chat with others who truly understand.
ZoomRooms take place at 6 p.m. MT (5 p.m., PT, 7 p.m. CT, 8 p.m. ET.)
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HELP US KEEP OUR SPOT ON THE
GREAT NONPROFITS' TOP-RATED LIST!
WE NEED 6 MORE REVIEWS.
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Won’t you help us raise visibility for our work by posting a brief story of your experience with us? It’s easy, only takes three minutes, and has a HUGE impact on our fundraising ability.
Even if you've written a review in past years, you can do it again.
Thank you!
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Meet Yvette, post-transplant person with PSC, who is also an athlete, competing in both the Senior Games and World Transplant Games.
"I meet so many people who have gone through a PSC journey far worse than mine," Yvette says, when asked what gives her hope. "They are happy and having full lives. It makes me think that...I can continue this journey with this new liver, and do good things for people."
CLICK IMAGE BELOW TO HEAR MORE ABOUT YVETTE'S STORY.
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Welcome to Sandi's
Circle
Several Things About PSC That Folks May Not Know
The theme of this year's Global PSC Awareness Day is unmet needs. In that same vein, here are a few things Sandi shared about PSC to help raise awareness for what she called, "My invisible Illness."
- "Most people assume I'm healthy (unless they know me). Even those who know I'm ill generally think things are far better or more stable than they truly are."
- "The hardest part about nights are insomnia. I'm beyond exhausted so much of the time, and I'm completely befuddled by the fact that my body won't let me sleep."
- "Each day, I take 20+ pills and vitamins. And that's a good day. If it's a rough day, or I'm having a cholangitis attack, that number shoots up closer to the 30+ mark, and some of those pills I take more than once a day."
If you'd like to follow Sandi's example and share something about the unmet needs of PSC for Global PSC Awareness Day, send a brief statement or short video (under 30 seconds)
to contactus@pscpartners.org by Thurs., Oct. 27. We'll share as many of them as possible on Global PSC Awareness Day, Oct. 29th.
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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.
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 bet you didn't know it is Car-tober! It is, and it's a great time to remind you that you can donate your vehicle in any condition to PSC Partners, and your old jalopy will fuel our search for a cure for PSC. Get all the details here.
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Our Mission: PSC Partners Seeking a Cure is to drives research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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