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THE DUCT
A Monthly Newsletter for the PSC Community
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Raise your hand if you plan to join us for
our last two post-conference webinars of 2022:
Monday, Nov. 14th, 6 p.m. MT
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TOP THREE REASONS YOU SHOULD ATTEND THIS WEBINAR |
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Hear experts speak about the MELD (Model End-Stage Liver Disease) score, which is used to determine the need for a liver transplant.
- Educate yourself about pre- and post-transplant issues, including contraception and pregnancy.
- Discuss the implications of transitioning from pediatric to adult care and how that relates to liver transplants.
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TOP THREE REASONS YOU SHOULD ATTEND THIS WEBINAR |
- Learn how to get involved in efforts to identify and mitigate diversity, equity, and inclusion factors affecting those impacted by PSC.
- Discover why promoting health equity within the PSC community is an ongoing commitment by everybody in our community, whether you are part of an underserved community or not, to ensure that optimal healthcare is achievable for ALL.
- Discuss why nobody with PSC should feel uncared for, underrepresented, or alone. We need YOUR voice.
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WE NEED YOUR HELP BY TONIGHT!
Interest Form for PSC Partners
Focus Group
Are you a patient with PSC or post-transplant? Please consider joining a PSC Partners focus group to help us determine the best measures of PSC symptoms to use in our new WIND initiative!
Click the button below to fill out a brief questionnaire by Wednesday, Nov. 9, 11:59 p.m. MT. Please read the details below before completing the survey. We know it's a quick turnaround, but your informed participation is vitally important!
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WIND was inspired by the call of our community to identify new treatment options for PSC and address unmet medical needs of PSC patients. These focus groups are a vital part of this initiative.
Participants may be based in the U.S. or Canada, and must be in the PSC Partners Patient Registry to join. If you're not part of the Registry yet, it takes about an hour to join and to become a participant of the Registry research community. If you need assistance to join the Registry, contact registrycoordinator@pscpartners.org.
- For focus group #1 to be held on November 15th, participants must have experienced at least 2 of these 3 symptoms in the past 3 years:
- Fatigue
- Sleep disturbance
- Cognitive dysfunction (brain fog)
- For focus group #2 to be held on November 17th, participants must have experienced at least 2 of these 3 symptoms in the past 3 years:
- Itch
- Abdominal/liver pain
- Depression/anxiety
- You will be sent several PDFs or Word documents of various symptom surveys to review prior to the focus group meeting. In order to participate in a focus group, you must be able to print them out for review and comparison of various survey options.
- Your input will form the basis for a larger community survey that will be submitted for publication and will help us make decisions about what surveys to use in the PSC Partners WIND initiative.
- Space within the focus groups is limited, but everyone’s feedback is important. We look forward to hearing from Registry participants via the follow up community survey.
- Only first names will be used, and pseudonyms are an option.
Goals of focus group:
- Review, discuss, and compare various symptom surveys, in order to determine which instruments best capture PSC symptoms.
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Identifying and Mitigating Health Inequalities in PSC:
A Discussion with Dr. Kidist Yimam
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In episode 35 of the Living with PSC Podcast, Host Niall McKay talks with Dr. Kidist Yimam, MD, Medical Director of the Autoimmune Liver Disease Program at California Pacific Medical Center. She is leading the PSC Partners Diversity, Equity, and Inclusion Working Group. In this podcast, they discuss health inequalities in PSC, including provider bias, lack of access to care, delay in diagnosis, importance of diversity in clinical trials, and more.
"It is not unusual to hear from some of our minority patients that they've been told by other providers that PSC affects people who are Caucasian, and they shouldn't be affected by the disease, leading to a delay in diagnosis of PSC, and even putting them at risk of poorer outcomes," says Dr. Yimam.
McKay and Dr. Yimam also discuss how including a diverse group of people in PSC natural history studies will allow researchers to better understand how genetics, socio-economic factors, cultural biases, and more affect the search for treatments and a cure for PSC. To make that happen, diversity is needed within the PSC Partners Patient Registry.
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PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Independent Media Producer, Director, and PSC Patient Niall McKay. Each month, this podcast explores the latest research and knowledge about PSC. Topics include patient stories, latest research updates from PSC experts, collaborations that are necessary to find better treatments and a cure, and more. This podcast has it all!
Living with PSC can also be found wherever you download your podcasts.
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Welcome our New Director of Development
ELIZABETH LEACHMAN
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Elizabeth Leachman joins PSC Partners with a robust background in fund development, marketing, events management, and nonprofit leadership. Currently based in South Bend, IN, Elizabeth most recently served as the Interim Chief Executive Director for Big Brothers Big Sisters – Southern Lake Michigan Region, and is the Board Secretary for Rebuilding Together St. Joseph County. She previously worked in the community and economic development nonprofit sectors with South Bend Heritage Foundation, the City of South Bend Venues Parks & Arts Department, and Downtown South Bend.
Elizabeth holds a master’s degree from the University of Southern California in Applied Research & Consumer Psychology and a Bachelor of General Studies & Psychology from Indiana University. In addition to being passionate about working with nonprofits and being involved in her community, Elizabeth is also a certified yoga instructor, and a classically trained ballet dancer. In her spare time, she loves teaching dance and yoga, hiking mountains, and spending time with her family of cats and wonderful husband.
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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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Watch the Fourth Webinar in our Post-Conference Series
The Future of PSC: Disease Pathogenesis, Oral Vancomycin, and Cancer Prevention and Surveillance
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Welcome to Sandi's
Circle
Sandi Was Always Quick to Include Everyone
"For those of us in this wonderfully wacky, extensively varied, lovely and large family, PSC stands for Please Stay Close," she wrote. "As in, the bonds we made are not fleeting, and we need each other come what may. For we are together in the fight, whatever it takes."
Let's make sure everyone in the PSC community is welcome and included.
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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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Work-place Giving Programs and Other
Unique Contribution Avenues are
Great Ways to Support PSC Partners
Take a look below to see if one of these programs is right for you.
GIVING TUESDAY
PAYROLL CONTRIBUTION
This is an easy way to participate in your company’s workplace giving program! Ask your Human Resources representative how to enroll, or send them our way, so we can answer any questions.
COMBINED FEDERAL CAMPAIGN (CFC)
AUTOMATED CLEARING HOUSE (ACH)
ACH is a network used for electronically moving money between bank accounts across the U.S. It allows you to make a donation directly from your bank to PSC Partners' bank, which is convenient and has a much lower transaction fee than a credit card. Visit our donation page, and select checking/savings under the payment section.
MATCHING GIFTS
Many companies match employee gifts to charitable organizations and/or volunteer time. 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! Email us with questions or for help with the process.
ONE TIME OR RECURRING GIFT
To make your tax-deductible donation by credit card, you may give securely by clicking here. Consider scheduling a recurring gift of any amount. It is a helpful way to ensure continuous support of PSC Partners, and you can update your amount or cancel at any time.
If you prefer to donate by check, please mail your donation to:
PSC Partners Seeking a Cure,6900 E. Belleview Ave. Suite 202, Greenwood Village, CO 80111
If your gift is in honor or memory of someone and you would like us to notify them or their family, please include a note with their mailing address or email address.
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Our Mission: PSC Partners Seeking a Cure 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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