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THE DUCT
A Monthly Newsletter for the PSC Community
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Thank you to the close to 550 people who attended our 2022 Annual PSC Partners Conference. Your time, effort, attention, and voices truly make a difference in the search for treatments and a cure for PSC. If you missed part or all of the Conference, or just want to re-visit some of the important sessions, click the link below to view the recordings. |
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YOUR FEEDBACK IS VERY IMPORTANT.
PLEASE COMPLETE THE SURVEY!
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If you attended the 2022 PSC Partners Conference but have not had time to complete the post-conference survey, would you please do that now? Your feedback is extremely important as we start planning for next year's conference and prioritizing our future efforts.
If you don't have time to complete the entire survey, feel free to answer the questions for which you have the most meaningful opinions. We truly appreciate your time and assistance!
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ATTENTION CONFERENCE REGISTRANTS:
You can still access the Conference platform
through the end of the month!
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- Explore the Conference Poster Hall to learn more about PSC research
- Search the Conference Registrant list to find attendees who live near you
- Visit the Exhibit Hall to learn more about PSC Partners, the PSC Partners Registry, and our amazing industry partners and sponsors
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We couldn't do it without each and every one of you! |
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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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PSC Partners Staff Thrilled to Attend CZI Conference! |
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Last week, our team came together at the Chan Zuckerberg Initiative (CZI) Rare as One Project convening. They met our PSC Partners Director of Research Strategy Ruth-Anne Pai and many of our Rare As One Cycle 1 family in person for the first time and made amazing new connections with Cycle 2 grantees. Thanks for the wonderful opportunity, CZI!
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Who is ready for a challenge?
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 9-September 30, 2022, during our Second Annual WALK83.01.
Why did we choose 83.01 as a goal?
What is this year's financial goal?
Last year, we raised over $90,000, which covers three years of a research project.
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 of this fundraiser taking place in 2022, don't you think?
Can I send support without walking/biking/swimming, etc.?
Of course. Thank you!
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WELCOME ANNA GENNARO
New PSC Partners Seeking a Cure
General Office Manager
Anna Gennaro is a Colorado native who received her bachelor’s in business administration from Colorado State University. She joined the PSC Partners team after working in the residential construction industry for 12 years.
Anna says she is looking forward to contributing to such an amazing cause.
Welcome to the team, Anna!
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NIH Team Recruiting Patients for PSC Study:
A Discussion with Dr. Theo Heller and Dr. Gracia Viana, NIH Clinical Center
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In episode 33 of the Living with PSC Podcast, Host Niall McKay talks with Hepatologist and Senior Research Clinician Theo Heller, MD, and Hepatology Fellow Gracia Viana, MD, National Institute for Health (NIH) Clinical Center, about their primary sclerosing cholangitis (PSC) study.
"We want to study the evolution of PSC," says Dr. Heller. "We're proposing a study that has the potential of unraveling some of the most fundamental aspects of the disease."
Dr. Viana adds, "We want to bring answers to these patients. (We hope to) explain the pathogenesis and try to (develop) new therapeutics for this disease that currently doesn't have an effective treatment."
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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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MEET OUR BOARD OF DIRECTORS |
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Check out this video to learn a little bit more about the amazing members of the PSC Partners Board of Directors, including their geographical location. To get in-depth information about these fabulous folks, visit the Board of Directors page on our website. |
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Welcome to Sandi's
Circle
A Post-Conference Message from Sandi
"(After the Conference, we learn that) alone, we're afraid, but together we're strong. Together, we can make magic. We can raise funds and find cures and collapse and cry and laugh and hug and empower ourselves to make a difference, because now we know we're not only fighting for ourselves but for our family. (We're fighting for) our other selves from all over the globe who come together at least once a year to take a stand against the stigma of being the sick one, to forge friendships that stand the test of time and realize that, like every fairytale story I've ever heard, true love lets you slay the dragons, conquer the biggest of obstacles, and gives you wings to soar."
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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OUR DONATION SYSTEM IS CHANGING
Here's what you need to know.
We're excited to roll out a new donation processing system.
Why? This system will be streamlined and easier for our donors as well as our staff.
What Will It Mean to Donors? We're sure you'll notice the ease of donating, but, other than that, it shouldn't be different on your end, except that our website donation page, contribution receipts, and thank you notes will look different.
Do Recurring Donors Need to Do Anything? No. All of our donor information will be transferred onto the new system.
Thank you for your support!
If you have any questions, please don't hesitate to reach out:
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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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