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THE DUCT
A Monthly Newsletter for the PSC Community
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Folks from inside and outside the U.S. have been sending us their WALK83.01 for PSC photos. Thank you to everyone who has donated and participated in the third year of this fundraiser for PSC research!
There's still 1 1/2 weeks left to support this fundraiser.
See details in article below.
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"My hope is that, one day, when someone says they’ve been diagnosed with PSC, we’ll hear the words, Oh, but there’s a cure for that!"
-- PSC Partners Supporter and Post-Transplant PSC Patient
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The Deadline to Support WALK83.01 for PSC is July 31st!
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There is still time to support our Third Annual WALK83.01 for PSC fundraiser. Whether $20 fits your budget, $100 is doable for you, or you feel like $1,000 works, every single amount makes a HUGE difference in our search for treatments and a cure for PSC. |
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Last year's donations fully supported two research studies for two years (plus a bit more for a third project). See details below:
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Novel Proteome-Wide Autoantibody Discovery in Primary Sclerosing Cholangitis - Lead Investigators: Young Investigator Michael Li, MD, PhD and Joseph DeRisi, PhD, University of California, San Francisco
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Unraveling the Immune Triggers of Primary Sclerosing Cholangitis With and Without Concomitant Inflammatory Bowel Disease - Lead Investigator: Prof. Rinse K. Weersma, MD, PhD, University Medical Center Groningen, The Netherlands
Let's keep that beaker bubbling, and reach our goal. Thanks, everyone!
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The 2023 PSC Partners Conference, Sept. 8-10, 2023
is for Everybody, Including Teenagers!
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Registation is open for our upcoming 2023 PSC Partners Annual Patient and Caregiver Conferece, and we've been getting alot of questions, including folks who are wondering if the Conference is appropriate for kids (ages 13-17) in our community. We're glad you asked. The short answer is YES! The longer answer is below.
It’s vital for young PSC patients to spend time with others around their same age. Often, the PSC Partners Conference is the first place these kids have met someone else with their rare disease, and the value of spending time with others who truly understand is immeasurable. Siblings and other teenage family members also find the gatherings fun and supportive.
At the Conference, we offer options specifically for this important group of attendees, including:
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- A designated teen lounge (monitored by young adult mentors) where they can rest, relax, chat, recharge, snack, and have fun
- Social events scheduled just for them
- Supportive peer group sessions and mentors
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A special For Teens Only Breakout Session on Friday, “Teens Question and Answer: Every Question is Fair Game”
If your teen is reserved or shy, no problem! Teens and young adults who have been to PSC Partners functions in the past will engage with newcomers to ensure everyone feels welcome and included. Additionally, if teens are interested in any of the educational sessions, they are welcome to attend.
Remember that, due to the sensitive subject matter at the Conference, attendees must be aged 13 and over. There are no exceptions, including babies. Thanks for understanding.
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NOW ACCEPTING APPLICATIONS FOR $1,000 SCHOLARSHIPS
The PSC Partners Annual Patient and Caregiver Conference Scholarship For PSC Patients and Pediatric (up to age 18) Parents and Guardians of PSC Patients
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Award Benefit and Admission Criteria:
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Amount – $1,000 to each of twenty-five recipients to defray the cost of attending the Conference. Scholarships are awarded on a “first come, first served” basis. One per family.
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Financial need – Applicants are those who, without this financial support, would be unable to attend the Conference.
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Diagnosis of Primary Sclerosing Cholangitis (PSC) – Applicants must have been diagnosed with PSC or be the parent or guardian of a pediatric (up to age 18) PSC patient.
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Conference registration – If you are awarded a scholarship, you will be contacted by a PSC Partners staff member. You must complete the Conference registration before receiving the scholarship funds. The deadline to apply for the scholarship is August 7, 2023.
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Scholarships are non-transferable – If the scholarship recipient is unable to attend the Conference, the Conference scholarship will be awarded to the next applicant on the waiting list.
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Funding Provided by The Kenneth S. Hollander Charitable Foundation
“The creation of a scholarship fund tailored for financially challenged PSC patients provides a transformative opportunity for individuals to attend this medical conference that can significantly impact their lives. By addressing the financial barriers that often hinder their participation, the scholarship fund empowers PSC patients to stay informed, learn about cutting-edge research, connect with healthcare professionals, and foster a sense of community with fellow patients. Together, we can build a brighter future for PSC patients by ensuring they have equal access to this life-changing medical conference, enhancing their overall quality of life, and promoting progress in the field of PSC research and treatment.”
-- Ken Hollander, The Kenneth S. Hollander Foundation
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Become a Conference Sponsor! |
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Sponsors are extremely important to the success of the Conference. The corporate and community funds are used to subsidize the cost of the Conference ensuring that the event is affordable and accessible to the PSC community. Additionally, there are benefits to sponsors, including marketing options and complimentary registrations, which differ depending on the sponsorship levels.
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Brigham and Women's Hospital Gets Visionary
Gift to Advance PSC Research
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Brigham and Women's Hospital announced a $25 million gift from Frank and Barbara Resnek to support research into primary sclerosing cholangitis (PSC).
This visionary gift will advance and expand work underway within the Resnek Family Center for PSC Research, which was launched at Brigham and Women's Hospital in 2019.
In total, the Resneks have given more than $45 million to PSC research, making them the largest donors to the disease in the world. The center is under the direction of Joshua Korzenik, MD, a clinician-scientist who received the prestigious title of Resnek Family Distinguished Chair in Gastroenterology and Hepatology.
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Click arrow on photo below to hear PSC Partners CEO Ricky Safer's Message to
Dr. Josh Korzenik and Frank and Barbara Resnek About the Resnek Family Gift to
Brigham and Women's Hospital for PSC Research.
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Welcome to Sandi's
Circle
Sandi Pearlman Says,
"Three Cheers for PSC Partners Conferences!"
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In her book Sandi's Journey, which is available on Amazon, Sandi encourages folks to find support, knowledge, and comfort at PSC Partners Conferences.
"Did you ever watch the old TV show Cheers, the one with Sam and Diane, Carla, Cliff, and Norm? It's about a bunch of people whose lives revolve around a bar...at least on the surface. Okay, I know, I know. You're already thinking I've flipped my lid writing about a TV show based on a bar, but bear with me for a second. Because, you see, while Cheers was, in fact, about (that), it was also about a family, people who loved each other even when the outside world didn't play fair. It also happens to have a phenomenal theme song, and, every single year as the PSC Conference rolls closer and closer, it pops into my head.
Now, it could be that I've spent too much time with insomnia and Nick-at-Nite, but I think it's more than that! You see, in the real world, I'm the other. I need a transplant. I have a rare disease. I itch. I'm swollen. I can't sleep, and my brain occasionally forgets helpful things like where I am or what I've been doing. But at the Conference, none of that matters. I'm not the other. I'm one and the same in the best of all possible ways. And you know what? You will be, too!"
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Click arrow on graphic below to hear the theme song to Cheers!
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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. |
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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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