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THE DUCT
A Monthly Newsletter for the PSC Community
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We kicked off the second annual WALK83.01 for PSC last weekend. People were out in force raising awareness and funds for PSC research. This fun fundraiser is ongoing. You can join and/or donate anytime through September 30, 2022. See article below for more information.
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This Just In...
DONATE NOW, AND HAVE YOUR
GIFT MATCHED!
Thanks to an anonymous donor, every gift up to the next $10,000 will be matched dollar for dollar. Yep! The next $10,000 will trigger a $10,000 match!
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WALK83.01 for PSC
Q and A
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Is the walk virtual or in-person?
WALK83.01 is virtual, and runs for 84 days. You can complete your 83.01 miles (133.5 km) by walking (or running, biking, hiking, swimming, etc.) right in your own town.
Can non-U.S. folks participate?
Absolutely. We hope you will! You can register and donate via the regular page. Canadians can donate/join directly through PSC Partners Canada. Check it out here.
Why is the walk 83.01 miles?
Because the unique disease code (ICD-10-CM code) for primary sclerosing cholangitis (PSC) is K83.01.
What is the fundraising goal?
In year two of this fundraiser, we are raising the goal to $120,000, which will support:
- Two Research Grants for
- Two Years
Sounds like a pretty good goal for year two in 2022, don't you think?
What if I can't or don't want to walk?
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
- Pedal
- Rollerblade
- Swim
- Run
- Choose another way of completing this task, or make a direct contribution
We encourage folks to be creative and complete this unique fundraiser in a way that is fun and doable for you!
How can I help raise PSC awareness while I'm walking?
Wear your PSC Partners gear while completing your 83.01 miles. If you don't have any, check out our online shop. In addition to our regular swag, we've created some fun WALK83.01 apparel. |
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Research Grants Program and ICRNetwork |
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We are accepting applications for the PSC Partners Research Grant Program through Monday, July 18, at 11:59 p.m. MT. Through this dynamic, annual program, PSC Partners has awarded more than $5.5 million, so far, to support promising PSC-related studies.
Now, PSC Partners has expanded efforts and capacity with the International Collaborative Research Network (ICRNetwork). This united effort includes multiple stakeholders driving forward key research projects prioritized by PSC patients. In our first round of prioritization, PSC Partners has focused on supporting drug development through the initiation of two multi-year projects: the Patient-Reported Outcome Measure (PROM) Project and the Worldwide Integration of Natural History Databases (WIND). Get more information on our website.
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The PSC Partners Mentor Program Gathering: Peer Support in Group Sessions virtual Zoom event is for everyone who is interested in the PSC Partners Mentor Program. There will be PSC Partners mentors facilitating groups for Patients with PSC, those who are Post-Transplant, Spouses and Caregivers, and Parents of PSC Patients. This session will provide an opportunity for sharing thoughts, expressing concerns, and supporting each other. |
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Visit our website for more information about the PSC Partners Mentor Program. On this page, you can volunteer to be a mentor and/or request a mentor. |
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The learning and collaboration continues!
JOIN US FOR THESE UPCOMING
POST-CONFERENCE WEBINARS
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Dr. Schofferman will be hosting a webinar for caregivers in September. Keep an eye out for more information. |
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Statement from PSC Partners about Upcoming
American Association for the Study of Liver Diseases (AASLD) Guidance
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July 14, 2022
PSC Partners is grateful to our amazing community of PSC patients, supportive family, caregivers, and friends, as well as the many researchers, clinicians, and industry representatives who are focused on PSC care, research, and drug development.
Many of you may be aware that PSC Partners and the PSC community have been asked to join a campaign to comment on a PSC guidance from the American Association for the Study of Liver Diseases (AASLD) regarding the section on the use of Oral Vancomycin (OV) for PSC. The final version of the guidance is awaiting publication; the exact language of the final recommendation on OV has not been made publicly available.
The campaign asserts that the “guidance will recommend using oral vancomycin only in a clinical trial setting” and that “this means that the insurer and provider community will now be able to start denying oral vancomycin as being acceptable treatment for PSC outside of a clinical trial -- citing this Guidance.” PSC Partners fully understands and empathizes with the fear, distress, and urgency that these assertions are bringing to the PSC community. PSC Partners cannot confirm the validity of the campaign’s assertions. In this specific case of evidence-based guidance, we believe that the best way for PSC Partners to effect change, as an organization, is to communicate this anticipatory distress and to continue to advocate for rigorous scientific research and data collection.
Since the specific language of the guidance remains unknown to us, we have refrained from public comment until we are able to meet with our many stakeholders and fully assess the ongoing situation. As the situation continues to evolve, we can assure you that we are engaged in this discussion and driven by our mission to support PSC patients and research. The PSC Partners position on the use of off-label medications can be found [here]. (July 2021)
PSC Partners’ involvement in both the discussion and research related to OV began as early as 2009, in the first year of the PSC Partners Research Program. We strategically funded, “A Pilot study of Vancomycin or Metronidazole in patients with Primary Sclerosing Cholangitis." Our work is guided by patient input. Just this year, at the Annual Conference, PSC Partners presented its Strategic Research Plan (SRP). This document was informed by the questions, concerns, and comments made by patients and caregivers during the numerous ROADMAP webinars and breakout rooms.
Effective dialogue grows as a result of hard work and much effort behind the scenes. It is also quite precarious and can be easily broken. We are together in this fight, and we can go the distance in our pursuit of treatments and a cure for PSC.
Ricky Safer, Founder and CEO of PSC Partners Seeking a Cure,
and the PSC Partners Team
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PSC and IBD:
What Everyone Wants to Know About Diet and Nutrition
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Check out this recording of the first webinar in our post-conference educational series. |
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Welcome to Sandi's
Circle
Sandi Encouraged Raising Awareness for PSC
Sandi and a few others started the Facebook Patient Group. The open group was for support, but she also saw it as a way to spread awareness of PSC. With increased awareness, she hoped, a cure would be found.
"Every time I post here (on the Facebook Patient Page), I raise awareness of PSC not only by sharing my story here with those who have PSC, but also those who read about it on my newsfeed, etc. (which I've allowed via my privacy settings). I'm also making a statement saying that this is me, and I will not let my illness control what I say and where, etc. I won't hide no matter what or from whom. My choice isn't for everyone, but, for me, that makes a difference, knowing I'm doing my part to get the word out there and say I have this; it doesn't make me less, and to be very up front about PSC and what it has brought/taken. There's absolutely no judgement for anyone who doesn't want to share that way, because, certainly, many people might not, but, for me, that's part of it."
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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Spread Awareness with PSC Partners Gear!
We've got lots of great PSC Partners gear at our virtual shop, including exclusive WALK83.01 shirts. Help us spread awareness during the walk and all year 'round! Our shop is an awareness-raiser, not a fundraiser.
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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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