register by mail - PSC Partners Seeking a Cure

2015 PSC Partners Conference Registration Form
Please fill out a separate registration form for EACH attendee.
If you plan to register for the 2015 conference by mail instead of submitting your registration online, simply print out
and complete this registration form and send it with your payment to PSC Partners Seeking a Cure at:
PSC Partners Seeking a Cure
5237 So. Kenton Way
Englewood CO 80111
All conference activities are exclusively directed towards PSC patients and caregivers 13 years of age and older. We do
not have the resources to provide activities, childcare or meals for children under 13 years old.
All registration forms and fees must be received by PSC Partners Seeking a Cure by 4/10/2015
All required * fields must be completed in order to register. Thank you.
ATTENDEE INFORMATION
First Name *___________________________________________________________________
Last Name *___________________________________________________________________
Specify your first and last names as you would like them to appear on your conference name tag.
Name Tag *___________________________________________________________________
Attendee Category * Please check the ONE category that applies to Attendee:
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PSC Patient
Transplant Recipient
Spouse/Partner
Parent
Other Relative
Friend
Corporate/Professional (Special registration fees apply)
Other (Please specify)_____________________________________________
Specify your relationship to the PSC patient*_______________________________________________
Street Address *_____________________________________________________________________________________
City *_____________________ State*______________ Postal Code *__________Country*________________________
Email *_____________________________________________
Phone *_____________________________
What is the best method for PSC Partners to contact you if we have any questions regarding your registration materials?
(Please check one)
□ Email
□ Phone
Are you attending the conference with someone? *
□ Yes □ No
Please list the other people attending with you and their relationship to YOU (example: parent, fiancé, sibling,
partner…)*
__________________________________________________________________________________________________
__________________________________________________________________________________________________
We ask for this information so that we can assign each attendee to the appropriate peer group. Peer groups will be
meeting throughout the conference weekend. Please submit the requested ages below, and know that we will keep this
information confidential.
What is YOUR age?*____________
What is the age of the PSCer you are attending with/representing?* ___________
Is this your first time at a PSC Partners conference? *
□ Yes
□ No
Please answer the following if this is your FIRST PSC Partners conference:
Would you like to be introduced to a mentor? (Mentors can be either PSCers or Caregivers) □ Yes
□ No
Confirm, as a mentee, that you will attend the Mentor/Mentee Meet and Greet during the social hour on Friday at 4:305:00PM □ Yes □ No
We highly recommend that you join us for the Newcomer Orientation on Friday 12:15 – 12:45PM* As a first time
attendee, if interested, confirm that you will attend the Newcomer Orientation. □ Yes □ No
Please answer the following if this is NOT your first PSC Partners conference:
Would you like to volunteer to be a mentor for a first time attendee? □ Yes □ No
(Mentors can be either PSCers or caregivers)
Confirm, as a mentor, that you will attend the Mentor/Mentee Meet and Greet during the social hour on Friday at 4:305:00PM □ Yes □ No
All attendees, please answer the following: Would you like to be included in the 2015 conference attendee booklet to
be handed out to the conference attendees? * □ Yes □ No
If Yes, I would like the following information to be included: (check all that apply)
□ Name
□ Address
□ Email
How did you hear about the PSC Partners Seeking a Cure conference? (Check all that apply) *
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Attended a past conference
Web Search
Yahoo Support Group
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Facebook Support Group
Physician
Other (please specify)_____________________
Where will you be staying? Please select one: _____Omni Mandalay at Las Colinas _____Other
If other please specify where: ______________________________________
Name on the hotel reservation: _____________________________________
Please make your reservations as soon as possible. The number of rooms available for the PSC Partners conference is limited!
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Will you be attending the casual pre-conference dinner on Thursday night at The Cellar Restaurant and Bar located across the
street from the Omni Mandalay Hotel at 220 E Las Colinas Blvd. Drop in anytime from 6:00 – 9:00PM*? □ Yes
□ No
PHOTOS AT THE CONFERENCE: Informal photographs and videos will be taken throughout the conference weekend. If you
object to the use of your likeness in these images for our website or promotional materials, please contact Meegan or Stacy
at [email protected]
NEW FOR 2015: The conference will officially begin on Friday morning at 9:30AM. All meals from Friday through Sunday
are included in the conference registration fee.
Will you join us for the Lakeside brunch on Friday 9:30AM – 12:00PM? * □ Yes □No
Please confirm if you will attend the Social Hour Meet and Greet on Friday at 2:30 – 3:45PM (This new social event is open to
all attendees. This event includes the Mentor/Mentee and Peer Group introductions)* □ Yes □ No
Will you join us for the Friday night Welcome Dinner from 6:00-9:00PM? * □ Yes
□No
Will you join us for the Saturday night banquet? * □ Yes □No
Will you join us for the Sunday morning breakfast and sessions? * □ Yes □No
Do you have special dietary needs? * □ Yes □No
The Omni Mandalay Hotel at Las Colinas will only provide special gluten free and/or vegetarian meals that are ordered at the
time of registration. Please indicate your selection for special meals here:
Do you need gluten free meals? * □ Yes
□No
Do you need vegetarian meals? * □ Yes
□No
Please choose the ONE group that best describes YOU for weekend peer group sessions: *
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Teen PSCers
Female PSCers in their 20s/30s
Male PSCers in their 20s/30s
Female PSCers
Male PSCers
Post-transplant PSCers
Spouses/Partners/Caregivers of PSCers
Parents of Pediatric PSCers age 17 and under
Parents of Young Adult PSCers age 18 to 25
Parents of Adult PSCers age 26 and over
Siblings/Other Caregivers of PSCers
Caregivers Coping with Loss and Carrying on the Spirit
Corporate/Professional Attendee (It is requested that corporate/professional attendees respect the privacy of patients
and caregivers by not attending any of the peer group sessions.)
Breakout Session Selection: On Friday, we will be offering the first breakout session in the afternoon. On Saturday,
in addition to the general sessions for all attendees, two separate breakout sessions are offered. In this portion of
the conference registration, you will select three presentations - one for each of the breakout sessions (one
session on Friday and two sessions on Saturday). Please select the "NONE" option if you wish to opt entirely out of
a particular breakout session. If you are attending the conference with someone, consider signing up for separate
breakout presentations and exchanging information to enhance your conference experience. We have three
separate tracks that you may choose to follow. These tracks are meant purely as suggestions for attendees with a
specific focus. Please select the presentations that interest you the most regardless of whether they are in a track
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or not. The three tracks include: 1. Recently Diagnosed Patients and those wanting to review the basics of PSC
(This track will be listed as The Basics.) 2. Parents of Pediatric PSC Patients (This track will be listed as Pediatric
Track.) 3. Transplant Issues (This track will be listed as Transplant Track.)
FRIDAY BREAKOUT SESSION - 1:30 - 2:30PM
Please select only ONE of the following sessions to attend in the Friday afternoon session:
□ The ABCs of PSC / Jacqueline G. O’Leary, MD, MPH (The Basics Track)
This presentation will discuss the medical issues faced by patients diagnosed with PSC, what issues they can expect to arise
and how to be best prepared for them.
□ PANEL: Planning for Transplant: Discussion of Financial, Social and Logistical Considerations / Precious Young, BSHS,
Manager, Transplant Patient Access Services, Baylor Health Care System, Dallas. TBD Post-Transplant PSCer and PostTransplant Caregiver (Transplant Track)
This panel will cover many of the issues that a pre-transplant PSC patient needs to consider when planning for transplant.
Precious Young will discuss how your insurance coverage works during the transplant process. Other panelists will present
their experience and advice for the social and logistical considerations.
□ PSC in Pediatric Inflammatory Bowel Disease: Current and Future Implications / Ashish S. Patel, MD (Pediatric Track)
This session will focus on PSC in the setting of pediatric inflammatory bowel disease, an association that is challenging for the
care and future implications to the patient. PSC often predicts a more complicated course of the underlying inflammatory
bowel disease and often challenges the clinician in its evaluation, monitoring and treatment.
□ Fecal Microbiota Transplantation (FMT) / Apurva Trivedi, MD
Fecal microbiota transplantation (FMT) has emerged as a highly safe and effective treatment for recurrent and refractory
Clostridium difficile colitis. There is developing research into the use of FMT for other gastrointestinal diseases. The current
status of FMT and future applications will be reviewed.
□ Managing Coexistent Inflammatory Bowel Disease in Patients With PSC / Themistocles Dassopoulos, MD
Up to 70% of patients with PSC also suffer from inflammatory bowel disease (IBD). Particular challenges in this population
include IBD management in patients with very impaired liver function or after liver transplantation; the prevention of colon
cancer; and the management of pouchitis after colectomy and pouch anal anastomosis.
□ Panel: How to Manage PSC as a Family Unit / Tracey Goodnight, LMSW, ACM, Linda Huante, Liver Transplant Recipient,
Mother of Three, Haley Spears, Certified Child Life Specialist, TBD: PSC Patient and Caregiver
In this interactive session, a diverse panel (a liver transplant recipient and mother of three, a transplant social worker, a Child
Life Specialist, a PSC patient and a caregiver) will discuss various family issues that PSCers face. Some issues that will be
discussed include: when, how and how much to tell kids about a parent’s or sibling’s PSC illness; how to explain PSC to family
and friends; how to accept it when you have unsupportive family members; how to handle the stress of living with PSC,
especially when spouses have different approaches to handling the situation; how to choose the right patient advocate.
□ Disability Benefits: What to Expect When You Can No Longer Work / Jeremy Burke, DM, ALHC
During this session, you will have an opportunity to learn more about the types of disability coverage (STD, LTD and SSDI) that
may be available to you, including gaining a basic understanding of what disability does and does not do and what to expect
when you apply. Group and private disability coverage will be discussed briefly, but Social Security Disability and your
questions will be the primary focus of the session.
□ PSC and ERCP/ Paul Tarnasky, MD
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This presentation will provide a summary of the indications for ERCP in the setting of PSC. The potential benefits and risks of
ERCP will be discussed. Various endoscopic methods and technique strategies will be summarized.
□ Interactive T’ai Chi Chih for Patients and Caregivers / Cindy L. Dunn, FNAO
T’ai Chi Chih, the art of becoming relaxed by doing 19 flowing movements and one posture, will be presented and
demonstrated in this breakout session. Several movements will be taught and attendees will have the opportunity to
experience this form of movement which is often referred to as “a moving meditation.” Come dressed in comfortable
exercise clothing.
□ None (Please select if you do not plan to attend a breakout presentation during this Friday afternoon session.)
Saturday morning Breakout SESSION - 10:45 - 11:45AM
Please select only ONE of the following presentations to attend in the Saturday morning session:
□ Panel of PSCers: Interactive Question and Answer Session / Fred Sabernick, Post-Transplant PSCer, Moderator
(The Basics Track – Option I)
Whether you're a PSCer or a caregiver, newly diagnosed or a veteran, here is your opportunity to ask your questions of
PSCers of all ages and in all stages of the disease. In this session you will have a chance to ask your questions and voice your
concerns to those living with the disease every single day.
□ How We 'See' PSC: A Primer to Imaging Tests for PSC / Greg dePrisco, MD, Diagnostic Radiologist (The Basics Track Option II)
An interactive, visually stimulating discussion of the role of imaging for PSC, from initial diagnosis to end stage disease. Time
will be spent comparing and contrasting imaging studies and discussing what you can do to get the most out of your exam,
emphasizing the role of ultrasound, CT and MRI scans.
□ Liver Transplant: A Surgeon’s Perspective / Tiffany Anthony, MD (Transplant Track)
This presentation will address liver transplant surgery including donor selection, recipient selection, the technical aspects of
cadaveric liver transplant and post op recovery/complications. A brief comparison with living donor liver transplant will also
be made.
□ Panel: A Multidisciplinary Approach to Pediatric PSC: Working with Your Dietitian, Social Worker and Psychologist /
Corinne Anton, PhD, Kirstin Brown, LCSW, Jill Rockwell, RD, CSP, LD, CNSC (Pediatric Track)
Panel members will discuss nutritional interventions for PSC, strategies to promote adherence with the medical plan and
medications, as well as resources available to assist children/teenagers and their families.
□ Teens: Every Question Is Fair Game - PSCer Q&A / Amal Aqul, MD
(Session For Teen PSCers ONLY)
This is a casual Q and A interactive session just for teen PSCers. This is your chance to sit down with a sympathetic pediatric
hepatologist to ask any question you may have about PSC, coping with the disease, your future plans or anything else that
you haven’t been able to discuss with your doctor, family or friends.
□ Diagnosing and Managing Cancers of the Liver and Bile Ducts / Jeffrey Weinstein, MD
Review the importance of screening for early cancer detection. Discuss the tests used to screen and diagnose cancers of the
liver and bile ducts. Understand some of the limitations of the tests used in the diagnosis of these cancers. Review treatment
options for cancers of the liver and bile ducts.
□ PSC and the Drug Approval Process / David N. Assis, MD
This breakout session will focus on the unmet need for effective therapies in PSC. The presentation will focus on the
necessary steps to obtain FDA approval for new drugs in rare diseases such as PSC. The group will discuss ways in which
clinicians, researchers, patients and advocates can work together to achieve this important goal.
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□ Panel: Caregivers: Helping Us Help Others / Panel Moderator - Mike Pearlman, JD, PSC Parent
This panel of experienced PSC caregivers provides an interactive forum supporting and addressing the challenges that
caregivers may face on a daily basis.
□ Bone Health in Primary Sclerosing Cholangitis / Naim Maalouf, MD
During this session, osteoporosis and its screening in patients with PSC will be discussed. The recommended calcium and
vitamin D intake for maintenance of adequate bone health will also be covered.
□ None (Please select if you do not plan to attend a breakout presentation during this Saturday morning session.)
Saturday afternoon breakout SESSION - 3:20 – 4:20PM
Please select only ONE of the following breakout presentations to attend in the Saturday afternoon session:
□ Interpreting Your Liver Test Results / Sumeet K. Asrani, MD, MSc (The Basics Track)
This session will help you understand the meaning of different lab tests that show inflammation in your liver and will include
an explanation of the changes in test results. We will also review how different medications can affect your liver tests. Cancer
screening lab tests and new means of assessing scarring in the liver will also be reviewed.
□ Liver Transplant: Myth and Reality / James Trotter, MD (Transplant Track)
Information presented in this session will describe the long-term survival data for liver transplant recipients with PSC
including the ability to predict outcomes for individual patients. Mechanisms to maximize a PSC patients’ chances for the best
outcomes, as well as cases with the best outcomes and scenarios for less than optimal outcomes will be discussed.
□ Therapeutic Challenges in Pediatric and Adolescent PSC / Amal Aqul, MD and Dev M. Desai, MD, PhD, FACS
(Pediatric Track)
Differences between pediatric and adult PSC will be addressed in this session, including diagnostic and therapeutic challenges
in pediatric PSC. Liver transplantation in pediatric PSC and post-transplant management will also be discussed.
□ Nutrition and PSC: OK, Now What Do I Eat? / Jeanette Hasse, PhD, RDN, LD, FADA, CNSC
(This is a detailed follow-up to her General Session presentation)
This session will provide an overview of why good nutrition is important for treatment of PSC and transplantation as well as
how PSC affects nutrition status. Common vitamin deficiencies in PSC will be discussed and practical tips for choosing
appropriate foods and supplements will be discussed. Resources for obtaining food and nutrition information and meal
planning will be shared.
□ Strategies for Coping with Life with PSC / Kerrie Goldsmith, RN, Parent of a PSCer, PSC Partners Facebook Moderator and
Maggie Marek, LCSW, ACM, TBD PSC Patient
Interactive session goals include giving patients and caregivers hope and straightforward strategies to deal with feelings of
isolation, the emotional ups and downs of PSC and the stress of the unknown. Ideas for day-to-day management and
different resources for emotional support will be discussed.
□ Pruritus in PSC / Caitriona Ryan, MD
In this session learn about what causes the challenging PSC itch, and ways to help you manage this symptom.
□ Social and Electronic Media: A Transplant Surgeon’s Perspective / Tiffany Anthony, MD
This session will present how social and electronic media have changed the way we physicians communicate with their
colleagues and how this communication affects patient care. The discussion will also include how social and electronic media
have changed the way that doctors communicate with their patients. The legal and ethical implications of communicating
medical information via electronic and social media will be addressed.
□ FMLA: Finding Your Way Through the Family and Medical Leave Act and Other Employment Related Issues / Tiffany
Rotondo, PHR, Corporate Human Resources Generalist
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The Family & Medical Leave Act (FMLA) is one of the most significant advances for families in our nation’s history. More than
50 million employees have taken leave under the FMLA since it was enacted. This session will explain the intricacies of FMLA:
how FMLA protects you in your job as the patient and as a caregiver and how to work with your employer when a leave is
necessary.
□ The Benefits of Advance Care Planning: Ensuring Your Values Are Respected / Co-Presenters: Robert Fine MD, FACP,
FAAHPM and Joanne Hatchett, RN, FNP, ACHPN, PSC Partners Seeking a Cure Board of Directors
Most of us plan for the future on a routine basis. Where would we like to be living in 5 years? What do we hope for our
family? What are our plans for retirement? Advance care planning is for everyone, for those who are advancing in age or
facing a serious illness as well as for those with no health issues. Everyone needs to be prepared for a sudden, unexpected
accident or an unfortunate life event. If we have a serious illness, we plan and prepare for ways of overcoming this illness.
These are all examples of Plan A. But what if something happens and Plan A is delayed or derailed? What is our Plan B and
who would explain that to others if we couldn’t explain it ourselves? This workshop will briefly review the evidence for the
benefits of advance care planning, followed by an interactive dialogue designed to help participants create and communicate
their own unique advance care plan.
□ Fundraising Basics / Co-Presenters: Chris Browner and Ken Shepherd, PSC Partners Board of Directors and Parents of
PSCers
This quick moving session will provide you with ten easy steps to ensure that your fundraising efforts for PSC Partners result
in success. Highly recommended for first-time fundraisers and veterans who want an energizing refresher.
□ None (Please select if you do not plan to attend a breakout presentation during this Saturday afternoon session.)
2015 CONFERENCE VOLUNTEER SIGN-UP
We are looking for volunteers to help us with different aspects of the 2015 conference weekend. We rely upon the support
of our volunteers to run the annual conference. Typically, the shifts are short (usually one to two hours), and we will provide
complete instructions and support to help all volunteers! Volunteering is also a great way to meet new people. If you would
be interested in helping us at the conference, please check the options that appeal to you, and we will contact you with more
information. Please check ALL that apply:
Preparation of Conference Materials
 For attendees who can arrive early. We will be working together on Tuesday and Wednesday, 4/21/2015 &
4/22/2015.
Early Registration
 Volunteers to host our early registration table in the Omni Mandalay at Las Colinas. We will be assigning shifts
beginning Thursday morning 4/23/2015 and running through Friday, 4/24/2015 at 6:00PM.
Thursday Evening Dinner
 Volunteers are needed to direct guests to the restaurant (located across the street from the hotel) and to welcome
attendees for an informal dinner and gathering. Shifts will start at 5:30PM on Thursday, 4/23/2015.
Friday Evening Welcome Dinner
 Volunteers to staff our registration table outside the ballroom. The shift will start at 5:00PM on Friday 4/24/2015.
Ambassadors and Greeters
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Various conference greeting and ambassador duties. Shifts will be assigned from Friday morning through Saturday
evening. Some of these are brief 10 to 30 minute shifts.
Conference Activities on Friday
 Volunteers are needed Friday morning and early evening to help organize and set up for the Friday activities and
sessions.
Vendor Booth and Attendee Registration Table Coordinators
 Volunteers are needed Friday and Saturday to help set up and organize the vendor and PSC Partners’ tables. In
addition, volunteers would help greet and assist our conference vendors.
PSC Partners Booths
 Volunteers are needed to help staff the PSC Partners Seeking a Cure booths during the conference. Shifts will be
assigned from Friday afternoon through Sunday afternoon.
Friday and Saturday Dinner Set Up
 Volunteers are needed to plan and coordinate the set-up of both the Friday evening reception and the Saturday
evening banquet. Volunteers will work together both before and during the conference to help plan and staff these
events.
POLICIES
By submitting your registration to the PSC Partners Seeking a Cure Conference, you agree to the following:
Attendance and Registration Policies: Admittance to any PSC Partners Seeking a Cure event is at the discretion of the
organizers. PSC Partners Seeking a Cure’s conference organizers reserve the right to limit attendance to our events for any
reason and also reserve the right to remove any attendee or sponsor company for any reason.
Cancellation and Refund Policy: If you have paid for a registration for our conference and cannot attend, PSC Partners
Seeking a Cure will gladly refund your registration fee if you notify us, by email at [email protected] of your
cancellation on or before April 10, 2015. Attendance that is cancelled after April 10,2015 cannot be refunded.
No-Shows: There are no refunds for paid attendees or sponsors who do not attend the PSC Partners Seeking a Cure annual
conference they had registered to attend.
Photos and Videos at the Conference: Informal photographs and videos will be taken throughout the conference weekend.
Before April 23, 2015, if you object to the use of your likeness in these images for our website or promotional materials,
please contact Meegan or Stacy at [email protected]
REGISTRATION FEES
Registration
Early Bird Registration
Regular Registration
Late Registration
Corporate/Professional Attendees
Postmarked by
02/13/2015
02/14/2015 to 03/26/2015
03/27/2015 to 04/10/2015
To 04/10/2015
Rate
$190 per registration
$200 per registration
$220 per registration
$270 per registration
ALL fees must be received by 4-10-2015.
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Conference fee includes: The brunch, social hour and dinner on Friday, breakfast, lunch, snack and banquet dinner Saturday,
breakfast and snack Sunday, evening entertainment, presentations, breakouts, open forums and conference materials.
Conference fee applies to ALL those who attend ANY PART of our conference and cannot be pro-rated.
Please note that the registration fees have increased this year, due to the extended Friday programming, the inclusion of the
brunch fees in the conference registration fees and increased facility charges.
I would like my conference fee receipts/confirmation sent to*:
□ Mailing address
□ E-mail address
PAYMENT INFORMATION
How will you be paying your registration fees?
Check______ Credit Card_____
Amount to be paid:* $___________
If paying by credit card, please complete the following:
Card Type *____________________(Visa, Master Card or American Express)
Card Number ___________________________________________________
CVV2 * (Security code)_________
Expiration Month *_________________
Expiration Year *________
Regardless of the payment method, we will need the following information:
All attendees’ names included in this payment*____________________________________________________________
Thank you for completing your 2015 PSC Partners Conference registration.
Please consider participating in The Road to a Cure fundraising campaign. All donations go directly to support the mission of
PSC Partners Seeking a Cure. For more information, please visit our website at http://www.pscpartners.org/fundraisers or
call us at 303-771-5227.
If you aren't already on our mailing list, please sign up now on our website homepage www.pscpartners.org to receive e-mail
updates about the conference and other programs.
We're looking forward to seeing you in April! If you have any questions, feel free to write to Ricky, Meegan or Stacy at
[email protected] or call PSC Partners at 303-771-5227. The office is located in Denver, Colorado (MST).
Comments? Feel free to include a message:
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