Research

Conference

August 2024

At our upcoming Conference, we will be celebrating the 20th anniversary of PSC Partners Seeking a Cure. As we count down to our gathering in Arizona, we thought we'd list the top 20 reasons you should join us October 18-20!

1. The Agenda is Packed! Over the course of three days, participants will have the chance to attend dozens of presentations on various PSC-related topics, including PSC Nutrition: Practical Tips and Tricks, Fatigue: Bringing Science and Symptoms Together, Living with IBD and the PSC-IBD Connection, and much more. Click HERE for a detailed agenda.

View an abbreviated draft agenda here.

2. Dozens of PSC Experts are Presenting! Our speaker line-up includes close to 60 international experts who specialize in various aspects of PSC. Click HERE for our speaker list.

3. Peer Support Opportunities Abound! During the weekend, there are several times set aside for peer-to-peer conversations and support. The peer groups include: Adult PSC Patients, Post-Transplant Adults, Teen PSC Patients and/or Post-Transplant, Caregivers, including separate groups for spouses, parents, and siblings, and Those Living with Loss.

4. Teens Get Special Treatment! Teens at the Conference, whether they are PSC patients, post-transplant, or friends & family, enjoy meaningful time together. For many, this is the first time they've met others their own age who can relate to what they are going through. This year's teen experience includes access to a designated teen lounge (moderated by young adult mentors), social events, a teen-specific Q and A with a medical expert, and more. Bonus: This year's teen lounge is poolside! (Nobody under age 13 is allowed at the Conference, including infants.)

5. Attendees Get Face Time with Mentors! Whether this will be the first time to meet your mentor/mentee, or you've supported each other at past Conferences, we offer several occasions for mentors and mentees to gather. If you do not, yet, have a mentor but would like one, let us know when you register. If you have attended at least one other Conference and feel ready to be a mentor, let us know that, as well. Click HERE for information about our Mentor Program.

6. Volunteer Opportunities are Available! From helping at registration, to directing folks to the right rooms, to decorating for our Saturday Night Gala, we have numerous volunteer opportunities available for folks who would like to lend a hand. Check the volunteer box when you register.

7. You Can Say Hello to Old Friends and Meet Somebody New! The agenda allows plenty of time to reconnect with old friends and make new acquaintances. Folks often tell us that, while this is a family they never imagined being a part of, they are so glad to have the chance to make connections with others who truly understand and care.

8. Time is Set Aside to Connect Directly with PSC Experts! Not only will there be time for post-presentation questions, we also have events and free time throughout the weekend where engagement is encouraged. (No personal medical questions, please.)

9. You Can Wear a Feather Boa or Fedora! In celebration of our 20th Anniversary, the theme of our Saturday Night Gala is Roaring 20s. While costumes are not required, they are highly encouraged. Some folks choose to stay lowkey when choosing an outfit while others go all out! Your chosen attire is completely up to you, but plan to have a rip-roaring fun time! 

10. Folks Have a Chance to Talk Directly with Industry Representatives! Representatives from numerous pharmaceuticals will be speaking about clinical trials at the Conference and distributing information at their booths. It's a great time to learn about what is happening in drug development.

Additionally, at the 2024 PSC Partners 20th Anniversary Annual Conference, Attendees Will...

11. Learn Something New about PSC

12. Savor Good Food Under Twinkling Stars

13. Meet PSC Community Members from Around the World

14. Shop for Cool PSC Partners Gear at the Conference Shop

15. Get Free Hugs and Unlimited Support Every Time They Need It

16. Offer Opinions and Answer Questions at the Community Booth

17. Relax By One of the Many Resort Pools

18. Share Knowledge During Trivia Night

19. Talk Through Issues With Others Who Truly Understand

20. Laugh, Cry, Learn, Support, Grow, Heal, Hope, and Love

"My heart felt bigger and so did my brain!"

- Past Conference Attendee

Help Us Spread the Word: If you are a medical provider or will be visiting your doctor soon, share this flier to display in offices. You can also share the link to our 2024 Conference Webpage with friends, family members, and colleagues who may be interested in this important PSC gathering. Thank you!

Sponsor the Conference: There are numerous opportunities for Corporate and Community sponsors. Questions? Email Audra@PSCPartners.org

• Click HERE to download the Corporate Sponsorship Packet
• Click HERE to download the Community Sponsorship Packet

2024 PSC Partners Annual Conference, Cutting-Edge PSC Research, and the Search for a Cause: A Conversation with Dr. Tom Karlsen

In episode 45 of the Living with PSC Podcast, Host Niall McKay talks with Tom Karlsen, MD, PhD, Co-Chair of the 2024 PSC Partners 20th Anniversary Annual Conference, and Clinical Specialist in Internal Medicine and Gastroenterology, Oslo University Hospital, Norway.

"I've worked on PSC for more than 20 years, and that aligns nicely with the 20-year anniversary of the Conference, because I've seen PSC Partners throughout this entire career."

Dr. Karlsen has partnered with the PSC Partners' team to create a dynamic agenda for the Conference.

"I am fortunate to be co-chairing this meeting together with PSC Partners," says Dr. Karlsen. "(The Conference) is a mixture of basic knowledge and the research agenda as it currently stands," adding that cutting-edge research results are also on the agenda. "This is a big honor for me." 

This conversation also covers the gut microbiome, the benefits of slowing PSC progression, and the search for a cause. "I think to achieve a full-stop in PSC development, you need to know the cause," he says. "There's alot of activity in this space for the first time in many, many years. So, it will be an exciting 3-5 years from now."

Click HERE to Listen to This Episode of the Living with PSC Podcast

Each month, this podcast explores the latest research and knowledge about PSC. From patient stories to the latest research updates from PSC experts to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

Click HERE to listen to all Living with PSC Podcast episodes.

Thank You to Everyone Who Supported Our Recent WALK83.01 Fundraiser for PSC Research!

We surpassed our goal by more than $43,500 for a total of $163,645.95. Wow!

Together, we are creating a world where a PSC diagnosis comes with a cure!

The Candian WALK83.01 Fundraiser for PSC Research goes through the end of the month. Get more information on the PSC Partners Canada website: PSCPartners.Ca

Check out the EVENTS page on our website for more community happenings.

If you have something to add, send it to contactus@PSCPartners.org.

We will review all submissions for interest to our PSC community.

Check Out These Recordings From Canadian Paediatric PSC Day

Hosted by PSC Partners Canada

On June 1, 2024, in Toronto, Canada, PSC Partners Seeking a Cure Canada hosted its first Canadian Paediatric PSC Day with co-host Dr. Amanda Ricciuto from the Hospital for Sick Children. This special event brought together PSC families and healthcare professionals to raise awareness and foster a community for those affected by PSC.

Check out the four recorded sessions here. These sessions were translated to French and are posted on the PSC Partners Canada YouTube Channel.

Welcome to Sandi's

Circle

After Attending Her First Conference, Sandi was

"In the Fight" and Looking Forward

Taken from the book Sandi's Journey.

"In 2008, Sandi attended her first PSC Partners Seeking a Cure Conference. Beforehand, she had made it very clear she did not want to go, but, by the time the Conference ended, she was in the fight. While Sandi certainly had her moments of sadness over her condition and what she had lost, these were short-lived and behind closed doors, as she believed and practiced looking forward, to see what could be...She drew her strength not only from within but also from the support, education, friendship, inspiration, and love she received from those with PSC, their caregivers, and others involved in the fight."

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.

Please know that, while no names will be shared, images may end up in videos, social media posts, etc. Send to contactus@pscpartners.org. Thank you!