|
|
THE DUCT
A Monthly Newsletter for the PSC Community
|
|
|
|
PSC Partners Announces 2021 Grants
See list below.
Together, we are creating a world where a PSC diagnosis comes with a cure!
|
|
|
|
Funding Total To Date Exceeds $5.5 Million
PSC Partners Announces
New Research Grants in 2021 Cycle
|
|
|
|
PSC Partners U.S., along with our affiliate PSC Partners Canada, who will announce their chosen grants soon, offer grants to conduct research that addresses an important and novel, basic or clinical research question related to PSC and closely associated diseases (such as inflammatory bowel diseases (IBD) and cholangiocarcinoma). Our Research Grants Program seeks to encourage investigators to conduct research in promising new areas, with the goal that data generated will lead to federal (NIH) or external international funding.
|
|
2021 PSC Partners Grant Awardees
Unbiased Tissue Metabolomic Profiling of PSC-IBD
Dr. Joshua Elias, BSc (Hons), MB, ChB (Hons), MRCP, PhD, University of Cambridge, Department of Medicine, Cambridge Institute for Therapeutic Immunology and Infectious Disease, Cambridge, UK
Targeting GPR35 to Treat Cholangiocarcinoma
Dr. Johannes R Hov, MD, PhD, Norwegian PSC Research Center, Division of Surgery, Inflammatory Diseases and Transplantation,
Oslo University Hospital Rikshospitalet,
Oslo, Norway
Dr. Georg Schneditz, PhD, Norwegian PSC Research Center, Oslo, Norway
PSC Studies Using a Bile-Duct-on-a-Chip
Prof. Tom Hemming Karlsen, MD, PhD, Norwegian PSC Research Center, Division of Surgery, Inflammatory Diseases and Transplantation, Oslo University Hospital Rikshospitalet, Oslo, Norway
Dr. Anna K. Frank, PhD, Norwegian PSC Research Center, Oslo, Norway
Prof. Stefan Krauss, MD, PhD, Hybrid Technology Hub – Centre of Excellence, Oslo, Norway
*First year sponsored by Douglas Carlson
Update on Primary Sclerosing Cholangitis Liver Waitlist and Post-Transplant Outcomes: Presentation of UNOS and Longitudinal Individual Center Data
Themistoklis Kourkoumpetis, MD, MPH, Baylor University Medical Center, Fort Worth, TX, USA
James Trotter, MD, Baylor University Medical Center, Dallas, TX, USA
Sumeet Asrani, MD, Baylor University Medical Center, Dallas, TX, USA
*This award is dedicated to our community.
Do BET Proteins Influence the Cholangiocyte Response to Injury and are They Therapeutic Targets for PSC?
Steven P. O’Hara, PhD., Associate Professor of Medicine, Assistant Professor of Biochemistry/Molecular Biology, Mayo Clinic, Rochester, MN
The Role of E3 Ligase HRD1 in Bile Acid Synthesis and Primary Sclerosing Cholangitis
Juncheng Wei, PhD, Research Assistant Professor of Pathology, Department of Pathology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Epigenetically Mediated Telomere Attrition Contributes to the Pathogenesis of Primary Sclerosing Cholangitis
Nidhi Jalan-Sakrikar, PhD, Mayo Clinic, AASLD Award
|
|
|
|
We'd like to extend a huge thank you to everyone who participated in our WALK83.01 for PSC.
The more than $90,000 raised will support three years of a
PSC Partners research project.
Together, we are creating a world where a
PSC diagnosis comes with a cure!
|
|
|
|
PSC Partners 2022 Annual Conference Survey
Let Us Know Your Interest in In-Person Attendance
|
|
|
|
PSC Partners is on the path to holding our annual conference in-person in Boston, June 2-5, 2022. As we actively plan this in-person conference, our priority is to do so safely. We want to hear from you to ensure our attendees are comfortable and that the conference meets the needs of our community.
If you've already responded, THANK YOU. If you haven't had a chance, please click the purple button below to send us your opinion.
PSC patients and caregivers who are considering coming to our 2022 conference should respond to this survey on or before 11/25/2021.
|
|
|
|
JOIN US FOR THE NEXT WEBINAR IN OUR
ROADMAP INITIATIVE SERIES
|
|
|
|
"Thanks for a great session. I think there was a lot of great discussion. It’s always wonderful to hear directly from patients, and hearing their thoughts and questions."
-- Dr. Angela Cheung, Panelist
Past ROADMAP Initiative Webinar
|
|
|
|
|
Each month, we highlight a video we think will be of interest to our community. This month, we present the amazing Global PSC Awareness Day webinar series put together by the European Liver Patients' Association (ELPA).
|
|
|
|
In case you missed the greetings from all over the world on Global PSC Awareness Day,
click the video below right.
|
|
|
|
It was so wonderful to partner with so many international PSC organizations!
(See the logos above of the organizations below left.)
|
|
|
|
The Relationship Between PSC & IBD, the "Leaky Gut" Hypothesis, Microbiota,
and more
A Discussion with
Dr. Steven O'Hara, Mayo Clinic
|
|
|
|
In episode 28, Host Niall McKay talks with Dr. Steven O'Hara, PhD, Associate Professor of Medicine, Assistant Professor of Biochemistry and Molecular Biology, and Research Scientist, Division of Gastroenterology and Hepatology at Mayo Clinic. They discuss the search for treatments and a cure for PSC.
"We're interested in the gut microbiome, of course, because we know there's a link between inflammatory bowel disease and primary sclerosing cholangitis," says Dr. O'Hara. "The multitude of microorganisms in the gut certainly influence many different diseases. There's increasing evidence that it may influence PSC, as well. So, our link would be what's happening in the gut...How does it actually affect the biliary epithelial cell function in this disease?"
|
|
|
|
PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Media Producer 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.
|
|
|
|
"It was the first day of my junior year of high school. First days are always a big deal, but this one seems even more monumental. As I go up the pathway to the school, I look around and think to myself that I fit in with all of the other kids walking in with me. The good thing is that no one knows that I have pains in my stomach, my headache is killing me, or that fatigue makes my day so hard."
Lindsay, 16, PSC and Ulcerative Colitis Patient
|
|
|
|
REGISTER FOR AN UPCOMING ZOOMROOM
|
|
|
|
|
|
ZoomRooms
Are a Great Way To Make
Peer-to-Peer
Connections!
|
|
|
|
ZoomRooms are not recorded, and are intended as safe, open forums.
|
|
|
|
ZoomRoom for PSC
Caregivers/Spouses/Parents
December 1, 2021, 6 p.m. MT
|
|
ZoomRoom for Teen
PSCers aged 13-20
December 14, 2021, 6 p.m. MT
|
|
ZoomRoom for Adult
PSC Patients Aged 18+
January 5, 2022, 6 p.m. MT
|
|
|
|
ZoomRooms and other events of interest to our community.
Help us keep our community informed by sending relevant events to PSC Partners! If you have an event you think should be added to the calendar, send information to contactus@pscpartners.org. Events will be screened for applicability to our community.
|
|
|
|
Welcome to Sandi's
Circle
|
|
|
|
As The Holidays Approach, This Quote from Sandi Pearlman Encourages Us to Treat Ourselves
"Spoil yourself. I know belts are tightening all around these days and not just from PSC weight loss. But I urge you to make (an) investment in yourself.
- You can treat yourself to weekly or monthly pedicures. (Guys, trust me, if you're thinking this suggestion is too girly, you haven't experienced the loveliness of a pedicure for badly itching feet.) Or buy yourself a bottle of your favorite polish, and do an at-home version.
- Love to read? Trips to the hospital and travel make lugging books back and forth a trial. ...One of those e-readers (could help with) emotional and physical sanity.
- Grab a blanket and go for a picnic in the park.
- Color your hair.
- Designate a game night.
In short, it doesn't matter what you do. Just make sure you do it, and enjoy every second 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.
If you have something to add to Sandi's Circle, send it to contactus@pscpartners.org.
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.
|
|
|
|
What is a DAF, and How Can It Help PSC Partners? |
|
|
|
We're so glad you asked! DAF stands for Donor Advised Funds. By utilizing this gift option, you benefit AND PSC Partners benefits, as well. If this contribution avenue is new to you, read below for an explanation.
A DAF is a type of giving program administered by a third party that provides you with the flexibility and most favorable tax benefits to easily support your favorite charities, like PSC Partners.
How it Works
- Find a qualifying third party investment fund, and open up a DAF. Minimums and internal fees may vary, so it's important to do your research.
- Contribute appreciated stock, art, real estate, etc. to your DAF for an immediate tax deduction.
- Allocate your money in provided investment pools.
- Recommend grants to qualified public charities of your choice at your own timing.
Key Benefits of DAFs
- Simple – All record-keeping, disbursements, and tax receipts are handled by the DAF sponsor.
- Flexible – Timing of your tax deduction can be separate from your charitable decision making.
- No transaction fees – Unlike credit cards that charge a transaction fee, 100% of your grant request goes to your charity of choice.
- Tax-efficient – Contributions are tax-deductible and any investment growth in the DAF is tax-free. You can easily donate long term appreciated securities, eliminating capital gains taxes, and allowing you to support multiple charities from one block of stock allowing for your full market value to go to PSC Partners instead of a net tax value.
- Family legacy – A DAF is a great way to build a tradition of family philanthropy.
Visit the Ways to Give page on our website for more information,
|
|
|
|
Two Ways To Get Unique Holiday Gifts
AND
Support PSC Partners Seeking a Cure
|
|
|
|
This holiday season, let your fingers do the shopping, and donate/raise awareness for PSC Partners! |
|
|
|
Your Amazon Shopping Can Result in Funds for PSC Partners
PSC Partners is a registered charity with AmazonSmile, Amazon’s give-back program for nonprofits. Every eligible purchase results in a donation when you select PSC Partners Seeking a Cure as your designated cause, and it does not matter whether or not you are a Prime member. Invite your family members, friends and colleagues to use AmazonSmile, and help support PSC Partners.
|
|
Raise Awareness for PSC Partners by Shopping at our Online Store
By wearing items or purchasing gifts displaying PSC Partners Seeking a Cure logos, you are raising awareness for PSC. Increased awareness will help in our search for a cure. Plus, you'll look great!
|
|
|
|
|
Our Mission: The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.
|
|
6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
|
|
|
|
|
