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Join the Cause - Believe in a Cure

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Scleroder ma Foundation
2014 National Patient Education Conference
July 25-27, 2014
Anaheim Marriott
Anaheim, CA
Join the Cause - Believe in a Cure
2014 CONFERENCE PROGRAM BOOK
Welcome to Anaheim and to Southern California!
The Scleroderma Foundation of Southern California welcomes you to the
land of the beautiful, blue Pacific Ocean with miles of beaches, golden
hills, stark deserts and stunning mountains. Oh, yes, and a little place
called Disneyland®. We hope you stay to visit our museums, aquariums
and historic missions, get in some great shopping, stroll our beaches, and
experience Tinseltown.
Southern California is pleased to host the 2014 National Patient Education
Conference. What we learn and the experiences we share during the next
few days will be critical to the Foundation’s mission and to the health and
welfare of everyone that struggles with scleroderma or cares for a loved one
with the disease.
The Southern California Chapter thanks all of our volunteers and the Greater
San Diego Chapter for its cooperation and volunteer support. We thank our
sponsors and donors that have supported our participation.
Thank you for attending the conference—for joining the cause and believing
in a cure.
Southern California Chapter
Chris Pettit, President
Jerold D. Kappel, CFRE, Interim Executive Director
Greater San Diego Chapter
Bill Martin, President
Kelly Davidson, Executive Director
Welcome to the 2014 Scleroderma Foundation National
Patient Education Conference
Dear Friends,
On behalf of the Scleroderma Foundation’s National Board of Directors, it is my pleasure to welcome you to Anaheim and the 2014
National Patient Education Conference, “Join the Cause – Believe in a Cure.”
No enterprise – especially one as large as this – can happen successfully without a team of dedicated people working together. This
weekend, all of us will benefit from the extraordinary efforts of many talented people who have given countless hours of time to
make this Conference a reality. My thanks goes especially to the amazing and talented staff of the Foundation’s National Office, the
dedicated leadership of the Southern California Chapter, and the extraordinary efforts of the Chapter’s corps of volunteers.
We take pride in offering you our largest program ever – 79 presentations, of which 48 are offered for the first time. A program so
rich in information would not be possible without the support of the Foundation’s Medical Advisory Board and other members of the
Conference’s faculty that have gathered to share their expertise with us.
This year, for the first time, we are including a Scientific Poster Session on Friday evening. This is a wonderful opportunity to meet
with researchers funded by the Scleroderma Foundation who will be standing by poster outlines of the scleroderma research they
are advancing, much thanks to the Foundation’s donors who support our research program. Make sure that you take advantage of
the opportunity to speak to these dedicated researchers.
We hope the presentations and workshops at this year’s Conference help you gain greater insights into the management of
scleroderma. We also hope that spending time with members of the scleroderma community from across the country and across
the globe will enrich your lives through new friendships forged and old acquaintances renewed.
Walt Disney once said, “If you believe in a thing, believe in it all the way – implicitly and unquestionable.” As we spend the
weekend on the doorstep of Mr. Disney’s great dream, we are well reminded that belief, coupled with action, has the power to
change the world. By joining together we believe we can find a cure for scleroderma while helping one another on our journey until
a cure is found.
Your presence here in Anaheim makes you an embodiment of this year’s Conference theme.
“Join the Cause – Believe in a Cure!”
Sincerely,
Robert J. Riggs
Chief Executive Officer
1
Conferen
Co
nf e r e n ce
c e S ponsors
p o nsor s
The leadership of the Scleroderma Foundation wishes to recognize and gratefully thank the following
sponsors whose generous underwriting and gifts have made this conference possible:
2014 Gold Sponsor
2014 Silver Sponsor
2014 Silver Sponsor
2014 Corporate Sponsor
The 2014 National Patient Education Conference educational workshop series is
named in memory of Ms. Linda Lee Wells.
Ms. Wells, who was from Wyoming, lost her battle with scleroderma in 2008. When
she was first diagnosed with the disease, she turned to the Scleroderma Foundation
for information and education about her condition. Always appreciative of the
work and mission of the Scleroderma Foundation, Ms. Wells left the organization
a significant legacy through a charitable remainder trust. Her family asked the
Foundation to use the funds to advance scleroderma education.
The Scleroderma Foundation is so pleased that you have come to Anaheim this
weekend to be a part of this great experience. We believe that the educational
opportunities offered at this year’s conference are exceptional and a fitting tribute to
the generosity of Linda Lee Wells.
2
2014 Schedule at a Glance
Friday, July 25
4:00 p.m. - 8:30 p.m. Registration
4:00 p.m. - 7:15 p.m. Exhibit Hall Open Platinum Ballroom 3 and 4
5:00 p.m. - 7:00 p.m. Poster Hall Open Platinum Ballroom 1 and 2
6:30 p.m. - 7:15 p.m. Dessert Reception
7:30 p.m. - 8:30 p.m. Welcome and Opening Keynote Platinum Ballroom 6
Saturday, July 26
7:45 a.m.
8:00 a.m.
7:45 a.m.
9:15 a.m.
- 5:00 p.m.
- 3:45 p.m.
- 9:00 a.m.
- 10:15 a.m.
10:15 a.m. - 11:15 a.m.
11:15 a.m.
12:15 p.m.
1:30 p.m.
2:30 p.m.
2:45 p.m.
5:30 p.m.
6:00 p.m.
-
12:15 p.m.
1:30 p.m.
2:30 p.m.
2:45 p.m.
3:45 p.m.
6:00 p.m.
Registration
Exhibit Hall Open
BREAKFAST
Grand Lecture (Concurrent sessions) PAH - Platinum 6
Localized Scleroderma - Platinum 1
Extended Networking Break
Meet Our Exhibitors
Workshops
LUNCH
Workshops
BREAK
Last Workshops of the Day
Cocktail Reception
DINNER/AWARDS BANQUET
Sunday, July 27
8:00 a.m.
7:00 a.m.
8:30 a.m.
9:30 a.m.
9:45 a.m.
10:45 a.m.
11:00 a.m.
12:00 p.m.
12:30 p.m.
- 1:30 p.m.
- 8:15 a.m.
- 9:30 a.m.
- 9:45 a.m.
- 10:45 a.m.
- 11:00 a.m.
- 12:00 p.m.
- 12:30 p.m.
- 1:30 p.m.
Registration and Exhibit Hall Open
BREAKFAST
Closing Keynote
BREAK
Workshops
BREAK
Workshops
BREAK
Workshops
A Note About Friday…
We have shiŌed our schedule this year and
will have the Opening Keynote on Friday night.
Please join us in the PlaƟnum Ballroom for a
dessert recepƟon at 6:30 p.m., followed by the
Opening Keynote at 7:30 p.m.
Also on Friday, we also will hold our first ever
poster session starƟng at 5:00 p.m. See below
for more details.
POSTER SESSION
We are pleased to announce the inclusion of a poster
session for research at this conference. The scienƟfic
posters presented at this session provide an invaluable
learning experience for aƩendees and presenters
alike. Visitors to the poster hall are able to browse
the science and have one-on-one conversaƟons with
researchers in a convenient and relaxed format.
PLEASE JOIN US for this important and interacƟve
session! Poster presenters will be available to discuss
their research with you on Friday evening from
5:00 p.m. – 7:00 p.m. in the PlaƟnum Ballroom 1 and 2.
3
General Conference Information
4
“We keep moving
forward, opening
up new doors and
doing new things, and
curiosity keeps leading
us down new paths.”
–Walt Disney
The Conference Registration/Information Booth is where you will receive your name badge that must be worn to all events,
pick up your conference gift bag and program book, and for any general conference information. It is located in the
Ballroom Foyer (map on page 27).
Conference registration hours are Friday, July 25: 4:00 p.m. - 8:30 p.m., Saturday, July 26: 7:45 a.m. - 5:00 p.m., Sunday, July
27: 8:00 a.m. – 1:30 p.m.
Medical Emergencies
PLEASE COMPLETE THE EMERGENCY CONTACT INFORMATION ON THE BACK OF YOUR NAME TAG AS SOON AS YOU RECEIVE IT! If
you are experiencing a life-threatening medical emergency, please call 911 or dial “0” (zero) on house phone. There is no physician or nurse
on site who can legally see or care for a patient with a medical emergency. If you need help with medical supply issues, please contact your
specialty pharmacy or oxygen carrier company for assistance. If you are in need of wheelchairs and/or oxygen tanks, the hotel has access to
a service that has rentals available. Please contact the hotel Front Desk for more information.
Special Meal Requests
If you have requested special dietary meals in advance, this will be marked on the front of your name badge. Please show your badge to your server at
the start of each meal. The Foundation has made every effort to offer gluten-free and vegetarian options for every meal.
General Hotel or Sightseeing Questions
Please visit the hotel concierge staff or the Front Desk for any specific room needs or hotel questions. Check-out time is 12:00 p.m. on Sunday if you
registered with the hotel as a conference attendee. The hotel bell staff can provide storage for your belongings at no charge.
Scleroderma Foundation Literature Table and Store
The Scleroderma Foundation literature table is located in the Pre-function area next to registration area (map on page 27).
Refreshments
Refreshments will be offered between each session except for lunchtime. For morning breaks, beverages will be offered and for afternoon breaks,
beverages and light snacks will be served. Sunday’s break will have more substantial snacks due to the workshops ending at 1:30 p.m. (Lunch on
Sunday is on your own.)
Photography
The Scleroderma Foundation uses electronic and traditional media including, but not limited to: photographs, video, audio footage, and testimonials
during the National Conference. All attendees, visitors, speakers and guests are advised that during their attendance at the conference there will be
photographs taken as well as audio/video recordings made of various activities, events and sessions. Each registrant grants the conference permission
to photograph participants in any session, and to use such photographs and the names of attendees in any materials which either represent the proceedings of the conference or discuss future conferences. IF YOU DO NOT GRANT THIS PERMISSION, PLEASE VISIT THE REGISTRATION BOOTH
FOR A SPECIAL NAME BADGE PRIOR TO ATTENDING ANY SESSIONS.
5
Speakers and Facilitators
Header here
Shervin Assassi, M.D., M.S.
Cathy Baca
Nancy Baldwin
Murray Baron, M.D.
Jill Blitz, P.T., D.P.T., A.T.P.
Mary Lynn Bowlin, N.P.
Jennifer Candelaria, M.S.W., L.C.S.W.
Arefa Cassoobhoy, M.D., M.P.H.
Murtaza Cassoobhoy, M.D.
Flavia Castelino, M.D.
Rhina Castillo, M.D.
Dane Christiansen
Lorinda Chung, M.D., M.S.
Philip Clements, M.D.
Kamila Dada
Sheetal Desai, M.D.
Robyn Domsic, M.D., M.P.H.
Ghassan El-Baalbaki, Ph.D.
Stephen Elrod
Paula Erwin-Toth, M.S.N., R.N., C.W.O.C.N., C.N.S., F.A.A.N.
Carol Feghali-Bostwick, Ph.D.
Tracy Frech, M.D., M.S.
Elaine Furst, R.N., B.S.N., M.A.
Daniel Furst, M.D.
Renee Gauthier, R.P.T., M.P.H., C.A.
Elise Gibney, Ph.D.
Jessica Gordon, M.D.
Karen Gottesman
Diana Hanley, M.A. O.T.R./L.
Diana Harcourt, Ph.D.
Joanna Harper, Pharm.D., R.Ph.
June Hatfield, M.S., R.D., C.N.S.C., L.D.
Laura Hummers, M.D.
Dana Ivanco, E.M.T.-I., C.C.M.A., C.C.R.C.
Heidi Jacobe, M.D.
Dinesh Khanna, M.D., M.S.
Robert Lafyatis, M.D.
David Leader, D.M.D., M.P.H.
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Vanessa Malcarne, Ph.D.
Virginia Maril, Ph.D.
Rosemary Markoff
Bill Martin
Cyndy Martin
Maureen Mayes, M.D., M.P.H.
April Medina
Thomas Medsger Jr., M.D.
Talie Melnyk
Sandra Mintz, R.N.
Liz Morasso, M.S.W.
Luc Mouthon, M.D., Ph.D.
Maureen Murtaugh, Ph.D., R.D.N.
Warren Nielson, Ph.D.
Lynn Nuccio, D.P.T.
Susan Nyanzi, Dr.P.H., M.C.H.E.S., A.C.S.M., F.R.S.P.H.
Elizabeth Ortiz, M.D.
Janet Poole, Ph.D., O.T.R./L., F.A.O.T.A.
Arnold Postlethwaite, M.D.
Kathleen Randolph
Isabel Reyes
Lyssin Romero, B.S.N., R.N., C.P.N.
Lesley Ann Saketkoo, M.D., M.P.H.
Maureen Sauve
Jen Schwartz, Psy.D.
Adina Schwartz, M.A., O.T.R./L., S.W.C.
Maggie Sepkowitz, L.C.S.W.
Bracha Shaham, M.D.
Richard Silver, M.D.
Virginia Steen, M.D.
Diane Tanaka, M.D.
Brett Thombs, Ph.D.
Kai Tramiel, M.B.A.
Toon van Helmond, M.S.
Daniel Wallace, M.D.
Joep Welling
Arline Wetter
Keynote Speakers
Opening Keynote: Carol A. Feghali-Bostwick, Ph.D.
Join us on Friday as Carol A. Feghali-Bostwick, Ph.D., opens the conference
by answering your questions about research through an informative and
interactive keynote address.
Research is the process that results in new drugs and therapies. Many
discoveries in research have been accidental. Serendipity has played a major
role in many of the currently available treatments. Scleroderma research
is crucial for the identification of an effective treatment for this debilitating
disease. To succeed in our goal to discover the cure to scleroderma, we all
have a role to play and a contribution to make. During this session, we will
discuss everything from discoveries in the laboratory and how they resulted
in blockbuster drugs to your role in getting a drug to the market.
Carol A. Feghali-Bostwick, Ph.D.
Dr. Feghali-Bostwick is the Kitty Trask Holt Endowed Chair and Professor of
Medicine in the Division of Rheumatology and Immunology at the Medical
University of South Carolina in Charleston, S.C. She also serves as vice
chair of the Scleroderma Foundation’s National Board of Directors and chair
of its Research Committee.
Closing Keynote: Daniel E. Furst, M.D.
Daniel E. Furst, M.D. will present the closing keynote address on Sunday
morning, which is titled “The Next Steps Forward in Systemic Sclerosis
(SSc) Research.” Dr. Furst is the first Carl M. Pearson Professor of Medicine
at the University of California, Los Angeles (UCLA), Medical Center. He also
is a member of the Foundation’s National Medical Advisory Board and vice
president for the Southern California Chapter’s Board of Directors.
Daniel E. Furst, M.D.
7
Join the Cause - Believe in a Cure
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Join the Inspire Scleroderma
Foundation Support Community
www.scleroderma.inspire.com
A World of Support At Your Fingertips
Community members come from all 50 US states
and from 118 Countries
13,000+ Members
165% Two-year community
growth rate, through May 2014
50,000+ Posts
between May 2013-2014
About the Scleroderma Foundation
www.scleroderma.org
Founded in 1998, the Scleroderma Foundation helps patients and their families cope with
scleroderma, promotes public awareness and education, and stimulates and support research to
improve treatment of scleroderma.
together we’re better
SM
Inspire
www.Inspire.com
Inspire (www.inspire.com) is a Princeton, NJ-based company with an online community of about
500,000 patients and caregivers. Inspire partners with over 100 nonprofit patient advocacy
organizations, such as the Scleroderma Foundation.
dŚĞŵŽĚĞƌŶƚĞĐŚŶŽůŽŐLJͲĮůůĞĚǁŽƌůĚŚĂƐŵĂĚĞŝƚŵƵĐŚ
ĞĂƐŝĞƌĨŽƌƚŚĞƐĐůĞƌŽĚĞƌŵĂĐŽŵŵƵŶŝƚLJƚŽĐŽŶŶĞĐƚĂŶĚ
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The modern technology-filled
world has made it much easier
for the scleroderma community
to connect and bond. Now,
you’ve traveled from all over
the world to aƩend this year’s
16th annual NaƟonal PaƟent
EducaƟon Conference in
Anaheim, California!
Visit the Inpsire poster on display in the main foyer near general registraƟon and place a sƟcker and
on your home country so we can see what today’s scleroderma world looks like.
OraCoat
XyliMelts
®
for dry mouth
Adhering discs for use while
sleeping and daytime!
XyliMelts long lasting adhering
WIN A TRIP TO THE 2015 NATIONAL CONFERENCE!
Just Fill Out and Return Your Conference EvaluaƟon!
At conference check-in, you received a giŌ bag that included the conference
evaluaƟon. The conference evaluaƟon is an important planning tool. We use your
feedback to make improvements for future conferences.
discs temporarily relieve dry mouth*
day and night, even while sleeping
when dry mouth is worst.
• 500 mg of Xylitol coats, moisturizes
and lubricates*
• Discretely sticks to gums or teeth
• Lasts all night
• May reduce risk of tooth decay
Please remember to write your name and contact info on the contest entry form
aƩached to the evaluaƟon. Turn in your completed evaluaƟon and entry form to the
RegistraƟon Desk on Sunday. We will separate the entry form and the evaluaƟon so
that your feedback will remain anonymous. AŌer the conference has ended, we will
randomly select one person to win free hotel, airfare and registraƟon to the 2015
NaƟonal Conference.
Be sure to aƩend Saturday night’s Award’s Dinner to find out where we will hold the
2015 NaƟonal Conference!
*Rules and regulaƟons apply. One trip will be awarded. Prize is not redeemable for cash.
Air travel must be within the conƟnental United States. This prize is non-transferrable
and must be used for the 2015 conference.
• 12 disc sample; just pay
$3.20 shipping (online
nline or
telephone orders)
Available at Rite Aid.
Call 877-672-6541 for telephone orders
or visit www.XyliMelts.com
* These statements have not been evaluated
by the Food and Drug Administration. This
product is not intended to diagnose, treat,
cure or prevent any disease.
9
2015 National Conference
The 2015 National Patient Education Conference will be held in…Come to the
Award’s Banquet on Saturday evening to find out! It is never too early to plan for
next year!
“Scleroderma Rest Stop”
The Scleroderma Foundation is providing a place for conference attendees to take a
break. The “Scleroderma Rest Stop” is located in Platinum 5 and will be open from
7:45 a.m. – 3:45 p.m. on Saturday and from 7:00 a.m. - 1:30 p.m. on Sunday.
Don’t Forget Your Free
T-Shirt!
Each conference attendee receives a free
T-shirt to commemorate your visit to the 16th
annual National Patient Education Conference
in Anaheim!
Pick-up your T-shirt from the Literature Table
near registration during the weekend. You must
bring along the pink coupon (shown left). You
will find the coupon in your conference gift bag
to redeem your shirt. If you lose or misplace
your coupon, please stop by the Literature
Table on Sunday for a shirt (should quantities
allow).
We cannot guarantee T-shirt sizes so act
quickly!
10
Wheelchair Service
Complimentary wheelchair service
will be available to conference attendees again this year. Volunteers
will be available to assist individuals move around the conference
center while sessions and special
events are scheduled. If you are in
need of a lift, just look for the sign
(shown below) to flag down a ride!
Join the Inspire Scleroderma Foundation Support Community
www.scleroderma.inspire.com
A World of Support At Your Fingertips
Community members come from all 50 US states and from 118 Countries
13,000+ Members
www.scleroderma.org
159% Two-year community
growth rate, through July 2014
Founded in 1998, the Scleroderma Foundation helps patients and their
families cope with scleroderma, promotes public awareness and education,
and stimulates and support research to improve treatment of scleroderma.
together we’re better
SM
www.Inspire.com
52,000+ Posts
between July 2013-2014
Inspire (www.inspire.com) is a Princeton, NJ-based company with an online
community of about 500,000 patients and caregivers. Inspire partners with
over 100 nonprofit patient advocacy organizations, such as the
Scleroderma Foundation.
livingpah.com
Scleroderma Awareness Items
Available on CafePress
TO SHARING
YOUR EXPERIENCE
Living PAH is a free resource offering
information and tools to help you take a
more active role in your care. It is a
community where individuals, groups and
programs unite in the idea that far more is
possible when we work together.
Visit LivingPAH.com, which features a tips
section that collects the experiences of
patients, caregivers and family members
dealing with PAH. You can learn from
others or share some advice of your own.
Your experience may be just what
someone else needs to hear.
ENROLL TODAY AT LIVINGPAH.COM
Help put an end to “Sclero-What?!” Check out our
collection of T-shirts, sweatshirts, mugs, baseball
hats and more! We have items that feature the
Scleroderma Foundation logo, and the phrases
“Ask Me About Scleroderma” or “Help Put An End
to Sclero-What?!” A portion of each sale benefits the
Scleroderma Foundation.
To order, please visit:
www.cafepress.com/sclerodermafoundation
©2014 United Therapeutics Corporation.
All rights reserved. US/LPAH/MAY14/100
4
1
0
2
The Scleroderma Foundation is proud to announce the continuation of the juvenile track at this year’s National Patient
Education Conference! We have teamed up with experts from Children’s Hospital Los Angeles and others around the country to
develop this specialized program. This year’s juvenile program includes sessions designed for the entire family. You can go to
any session that is offered over the weekend, but if you are looking to focus on the juvenile aspects of scleroderma, there are
many options!
The Kid’s Activity Room in Elite 1 is facilitated and staffed by CoachArt, a non-profit based in Los Angeles that is dedicated to
improving the quality of life for children with chronic and life-threatening illnesses, and
their siblings. This room is for juveniles aged 5-17. The activity room is run concurrently
with the other workshops. This is a great place for our younger patients, siblings, and
children of patients to meet and do projects together while the parents and young adult
patients attend workshops.
In Elite 2, we will run programming aimed at the older juveniles. This room will have
speakers talking to juveniles age 13 and older about different aspects of the disease.
In Elite 3 (see map on page 27), scleroderma experts will run educational workshops
for adults who have a juvenile scleroderma patient in their life. Come join other parents,
guardians and caregivers to learn about the disease, as well as different ways to deal
with it.
In order to participate, parents or guardians must sign a liability release and children
will need to be signed in and out of this room by a parent or guardian. All attendees
associated with the juvenile program, whether child or adult, MUST come to the
orientation session in Elite 1 on Saturday morning from 8:45 a.m. - 9:00 a.m.
13
2014 Juvenile Program Schedule - Saturday
Breakfast - Platinum 5
7:45 a.m. –
9:00 a.m.
8:45 a.m. –
9:00 a.m.
WORKSHOP
ROOM
Tables marked with balloons are reserved for juveniles!
Juvenile Program Orientation (All juvenile program attendees) - Elite 3
CoachArt Room - Elite 1 (Ages 5+)
Juvenile Room - Elite 2 (Ages 13+)
Childhood Onset Scleroderma:
An Update
Juvenile Meet and Greet
GO-Fame Theater
9:15 a.m. –
10:15 a.m.
Parent/Caregiver Room - Elite 3
Bracha Shaham, M.D.
Refreshment Break 10:15 a.m. - 11:15 a.m.
10:15 a.m. –
12:15 p.m.
12:15 p.m. –
1:30 p.m.
1:30 p.m. –
2:00 p.m.
Canvas Painting
Brushstrokes
A Picture is Worth a
Thousand Words (Part 1)
Maggie Sepkowitz L.C.S.W.
Navigating the School System
Jennifer Candelaria, L.C.S.W.
Liz Morasso, M.S.W.
Lyssin Romero, B.S.N., R.N., C.P.N.
Lunch and Roundtable Discussion - Orange County 1
Come pick up your kids, grab a boxed lunch in the Platinum Ballroom, and go to the Orange County Ballroom 1.
Eat lunch while participating in a roundtable discussion.
Ice Cream Social
CoachArt
Intimacy and Sensitive Topics:
What Do I Need to Know?
Diane Tanaka, M.D.
2:00 p.m. –
2:45 p.m.
Mini Golf Activity
First Tee of LA
2:45 p.m. –
3:45 p.m.
Nutritional Workshop
June Hatfield, M.S., R.D., C.N.S.C., L.D.
Refreshment Break 2:30 p.m. - 2:45 p.m.
Go with the Flow: Mindfulness and
Yoga as Tools for Optimal Living
Jen Schwartz Psy.D.
Elise Gibney Ph.D.
Intimacy and Sensitive Topics:
What Do I Need to Know?
Diane Tanaka, M.D.
At the completion of the last workshop, please come pick up your child. You can drop him or her back off in Elite 1 for the juvenile dinner activity at 5:30 p.m., and then come to
the Platinum Ballroom in time for the cocktail reception followed by the Dinner and Awards Banquet.
5:30 p.m.
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Disney Dinner Activity
Disney VoluntEARS
Awards Banquet (Kids will reveal next conference city with posters)
2014 Juvenile Program Schedule - Sunday
Breakfast – Platinum 5
7:00 a.m. –
8:15 a.m.
WORKSHOP
ROOM
Tables marked with balloons are reserved for juveniles!
CoachArt Room - Elite 1 (Ages 5+)
A Picture is Worth a
Thousand Words (part 2)
Yoga
8:30 a.m. –
9:45 a.m.
Juvenile Room - Elite 2 (Ages 13+)
Adina Schwartz, M.A., O.T.R./L., S.W.C.
Lynn Nuccio, D.P.T.
Maggie Sepkowitz, L.C.S.W.
Liz Morasso, M.S.W.
Parent/Caregiver Room - Elite 3
Panel Q&A
Rhina Castillo, M.D.
Sandra Mintz, R.N.
Panelist - Isabel (Alma) Reyes
Panelist - April Medina
Refreshment Break 9:30 a.m. - 9:45 a.m.
9:45 a.m. –
11:00 a.m.
Healthy No-Bake Cooking Challenge
Food and Fun Club
Moving for Better Health (and Fun)
Transition/ Teaching Self Advocacy
Jill Blitz, P.T., D.P.T., A.T.P.
Diana Hanley, M.A., O.T.R./L.
Sandra Mintz, R.N.
Elizabeth Ortiz, M.D.
Refreshment Break 10:45 a.m. - 11:00 a.m.
Panel Discussion in Elite 3 - All Parents, Caregivers, and Older Juveniles
11:00 a.m. –
12:00 p.m.
12:00 p.m.
T-Shirt and Canvas Bag Signing
CoachArt
Susan Nyanzi, Dr.P.H., M.C.H.E.S., A.C.S.M., F.R.S.P.H.
JoAnna Harper, Pharm.D., R.Ph.
Isabel (Alma) Reyes
April Medina
Juvenile Conference Wrap-Up With a Snack
Please join your child in Elite 1 and enjoy a snack with them while we wrap up the weekend!
15
Juvenile Workshops
A Picture is Worth a Thousand Words What does having scleroderma mean to you as a teen/young adult? Having scleroderma can
look differently for each person. It can affect your relationship with family, friends and partners, and it can affect the way your see
yourself. In this workshop, we will use creative methods to reflect on and celebrate who you are right now, who you want to be, and
all that helps you get there.
Childhood Onset Scleroderma: An Update The presenter will present an up-to-date discussion about how children with scleroderma
and related diseases, such as mixed connective tissue disease, clinically present to the doctor. We also will discuss the tests that
are important to diagnosis and define the extent and progression of the disease; medications and other therapies; disease outcomes
in children; and pertinent research.
NEW in 2014 Go With the Flow: Mindfulness and Yoga as Tools for Optimal Living
Adolescents often experience significant stress,
which can negatively impact overall functioning, health and emotional well-being, relationships and academic achievement. The
tools of yoga and mindfulness can help you increase wellness and maintain a healthy lifestyle balance. You will learn more about
the relationship between mind and body, including the impact of stress on functioning and well-being. Learn movement, breath and
mindfulness techniques that help to manage stress and promote wellness and health in your life. Increase your ability to manage
emotions, make good choices, and purposefully “act” instead of “react” so that you can move your life in the direction you want
it to go. Participants will leave feeling inspired, empowered, capable and calm. You can participate in your regular clothing. This
workshop will be for participants of all levels of physical fitness.
NEW in 2014 Intimacy and Sensitive Topics: What Do I Need to Know? (Designed for Older Adolescents) This workshop will review
important information about intimacy, including normal sexual development, confidentiality, and how to protect one’s health. The
latest information about contraception will be reviewed. The speaker will also discuss how to talk to your health care providers about
intimacy and sexuality, as well as to how to talk to family members and romantic partners. There also will be a discussion about the
impact of your disease on your sexual health, as well as the impact of your sexual life on your disease.
NEW in 2014 Intimacy and Sensitive Topics: What Do I Need to Know? (Designed for Parents/Caregivers) This workshop will review
important information on intimacy, normal sexual development and confidentiality. The latest information about contraception
will be reviewed. There also will be discussion about how your child’s sexual development impacts their disease, and how the
disease impacts your child’s sexual development. There will be a discussion about how to provide your child with important health
information about their intimate lives, and how to find further information about the topic.
16
Juvenile Workshops
Juvenile Panel Discussion (for children, teens, young adults and parents/caregivers) This is a combined session for children, teens,
young adults and their caregivers. A panel of teens and young adults who have lived with scleroderma since childhood will share their
experiences since diagnosis. They will discuss what they have learned having lived with this disease since childhood. In addition, this is
an open forum for discussion for everyone to learn from each other’s experiences of how to live successfully and achieve your dreams.
NEW in 2014 Moving for Better Health (and Fun) This session will be a fun, interactive time to learn some new moves to make you more
flexible and feel better. Learn easy tips to get your body moving. The presenter will use activities, such as stretching, moving to music
and games, to help improve your flexibility and movement while having fun.
Navigating the School System In this presentation, we will discuss the rights of students with chronic medical conditions. We will cover
the school’s responsibility to ensure that students with chronic conditions receive the appropriate services. We also will explore the
available services offered within the school system and challenges that may occur along the way.
NEW in 2014 Nutritional Workshop
Listen to a registered dietitian talk about the importance of eating well and managing the nutritional
needs of a child living with scleroderma.
NEW in 2014 Panel Q & A (for parents/caregivers)
This session is designed for parents and caregivers. In this forum, you will have the
opportunity to hear the life experiences of young adults who were diagnosed with scleroderma as children. They will be joined by a
physician and nurse for an open discussion and Q&A session. Discussion topics may
include school issues, relationships, body image, talking with friends, understanding the
disease, medications, participating in appointments and coping.
NEW in 2014 Transition/Teaching Self-Advocacy Throughout our life, we have transitions:
elementary to junior high school, high school to college, and college to the workforce
are just a few. How we learn to cope and adapt to these changes is part of everyday life.
However, scleroderma adds a new transition from the day of diagnosis and throughout a
person’s life. Being successful includes promoting and teaching our teen self-advocacy
and self-care. Caregivers will learn about a “toolbox” of information and resources,
including how they can foster independence in their teenagers beginning from day one.
Participants will learn ways to navigate and prepare for the transition from pediatric to
adult care. The presenter is an adult medical provider who specializes in transition.
17
2014 Workshop Schedule – Saturday
7:45 a.m. 9:00 a.m.
BREAKFAST – Platinum 5
WORKSHOP ROOM
Platinum 6 (All sessions here are filmed)
9:15 a.m. 10:15 a.m.
Pulmonary Arterial Hypertension
11:15 a.m. 12:15 p.m.
Platinum 6
(All sessions here are filmed)
Platinum 1
Platinum 2
Platinum 8
Medical Emergency
Readiness and
Visiting the ER:What
You Need To Know
Murtaza
Cassoobhoy, M.D.
Joep Welling
Platinum 9
Platinum 10
Classification
and Staging of
Scleroderma Using
Skin Thickness and
Blood Antibodies
Shervin Assassi, M.D.,
How Does
Scleroderma Cause
Musculoskeletal and
Nerve Pain?
M.S.
Thomas Medsger
Jr., M.D.
Gold Key 1 and 2
Demystifying the
Pharmacy World
Platinum 5
(Meal Room)
M.E.L.T.
Your Hands
Joanna Harper,
Pharm.D., R.Ph.
Talie Melnyk
For Men Only: The
Medical Aspects of
Scleroderma
What Can
Aromatherapy Do For
Scleroderma?
Richard Silver,
M.D.
Renee Gauthier,
R.P.T., M.P.H., C.A.
For Men Only: The
Psychological Effects
of Scleroderma
Yoga for
Scleroderma
GRAB AND GO LUNCH - Platinum 5
Are Endogenous or
Marijuana-Derived
Cannabinoids Potential
Therapeutics for
Scleroderma?
Emerging
Therapies in
Scleroderma
Flavia Castelino,
M.D.
Arnold Postlethwaite,
M.D.
2:30 p.m. 2:45 p.m.
Managing
Gastrointestinal
(GI) Involvement in
Scleroderma
Dinesh Khanna,
M.D., M.S.
Scleroderma 101
Hand Involvement
Maureen Mayes,
M.D., M.P.H.
Luc Mouthon,
M.D., Ph.D.
Dry Eyes and Dry
Treatment of Early,
Mouth: What Do
Diffuse
Venus Williams and
Skin Disease
Scleroderma Have in
Tracy Frech,
Common?
M.D., M.S.
Murray Baron, M.D.
REFRESHMENT BREAK
Pain: The Causes and
Treatment of Pain in
Scleroderma
Daniel Furst, M.D.
18
Platinum 7
What the Doctor Should Team Approach to
Lupus and Other
Have Told Me About SSc Pro-Active Care
Overlapping
On My First Consult Visit Lesley A. Saketkoo,
Diseases
M.D., M.P.H.
- And Finished on the
Daniel Wallace,
Nancy
Baldwin
Second Visit
M.D.
12:15 p.m. 1:30 p.m.
2:45 p.m. 3:45 p.m.
Heidi Jacobe, M.D.
(This session is for those diagnosed with Localized Scleroderma)
EXTENDED NETWORKING BREAK WITH REFRESHMENTS
Philip Clements, M.D.
1:30 p.m. 2:30 p.m.
The Molecular and Cellular Profile of Morphea
Robyn Domsic, M.D., M.P.H.
10:15 a.m. 11:15 a.m.
WORKSHOP
ROOM
Platinum 1
Common Sleep
Disorders and
Scleroderma: An
Overview
Warren Nielson,
Ph.D.
The Scleroderma
Pulmonary Fibrosis in
Patient-Centered
Systemic
Eating Well with
Intervention
Network:
Caregiver 101
Sclerosis: Diagnosis
Scleroderma
SPIN
Ginny Maril, Ph.D.
and Management Maureen Murtaugh,
Brett Thombs, Ph.D.
Maureen Sauve
Karen Gottesman
Robert Lafyatis,
M.D.
Ph.D., R.D.N.
“Does it Hurt?”
Explaining Your
Illness to Your
Children
Vanessa L.
Malcarne, Ph.D.
Toon van Helmond,
Kathleen Randolph
M.S.
Joep Welling
5:30 p.m. 6:00 p.m.
Cocktail Reception . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Platinum 5 & 6
6:00 p.m.
Awards Banquet (Dinner begins at 6:00 p.m.) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Platinum 5 & 6
2014 Workshop Schedule – Sunday
7:00 a.m. 8:15 a.m.
BREAKFAST – Platinum 5
8:30 a.m. 9:30 a.m.
CLOSING KEYNOTE (Filmed) The Next Steps Forward in Systemic Sclerosis Research. . . . . . . . . . . . . . . . . . . . . . . . Dan Furst, M.D. . . . . . . .. . . . . . . . . . .Platinum 6
9:30 a.m. 9:45 a.m.
REFRESHMENT BREAK
WORKSHOP
ROOM
9:45 a.m. 10:45 a.m.
Platinum 6
(All sessions here are filmed)
Prediction of Progression
and Complications in
Scleroderma
Laura Hummers, M.D.
Platinum 1
Is a Gluten-Free
Diet Effective
for Scleroderma
Patients?
Susan A Nyanzi,
Dr.P.H., M.C.H.E.S.,
A.C.S.M., F.R.S.P.H.
Platinum 2
12:00 p.m. 12:30 p.m.
12:30 p.m. 1:30 p.m.
Platinum 8
Platinum 9
Platinum 10
Hand and Face
Scleroderma and
Stem Cell Transplant: Capillaroscopy Basics: Incontinence: What
Exercises and
The Psychological
A Patient’s
What the New Criteria You Need to Know
Management of Daily
Impacts of
Perspective
Paula ErwinMeans for You
Skills: An Occupational
Scleroderma
Bill Martin
Tracy Frech, M.D.,
Toth, M.S.N.,
Therapy
Perspective
Ginny Maril, Ph.D.
Janet Poole, Ph.D.,
O.T.R./L., F.A.O.T.A.
10:45 a.m. 11:00 a.m.
11:00 a.m. 12:00 p.m.
Platinum 7
M.S.
Cyndy Martin
R.N., C.W.O.C.N.,
C.N.S., F.A.A.N.
Gold Key 1 and 2
Does Appearance
Matter?
Diana Harcourt,
Ph.D.
Platinum 5
(Meal Room)
Assisted Yoga for
Scleroderma
Kathleen Randolph
REFRESHMENT BREAK
Pregnancy Issues in
Scleroderma
Lorinda Chung,
M.D., M.S.
What Your Dentist
Wants to Know About
Scleroderma
David Leader,
D.M.D., M.P.H.
Living Well With
Scleroderma: How
We Do It
Elaine Furst, R.N.,
B.S.N., M.A.
And Panelists
Perspective: What You
Can Do to Help
African Americans and
Manage Your Disease
Scleroderma
Dana Ivanco,
E.M.T.-I., C.C.M.A.,
C.C.R.C.
Virginia Steen, M.D.
The Brain and Brain When Scleroderma
Function in
Comes Between Us
Ghassan
Scleroderma
Arnold
Postlethwaite, M.D.
El-Baalbaki,
Ph.D.
Healthcare Reform:
Opportunities and
Challenges in a
Changing Insurance
Marketplace
Dane Christiansen
Restore Yourself
Wherever You Are,
Whatever You’re
Doing
Lesley Ann
Saketkoo, M.D.,
M.P.H.
REFRESHMENT BREAK
Vascular Disease in
Effective Grassroots
What’s All the Hype? Scleroderma: Beyond
What to Think About Advocacy: Using Your
Calcinosis in
Diagnostic Testing In Raynaud PhenomKidney Involvement In
Raynaud and
Voice to Advance Yoga for Your Hands
Social Media and
if You Have SSc
Dermatomyositis and
enon and Raynaud
Scleroderma
Systemic Sclerosis
Pulmonary
Research
and Improve Kathleen Randolph
Scleroderma
With
PAH
Jessica Gordon,
Philip Clements,
Scleroderma
Crisis
Arefa Cassoobhoy,
Robert Lafyatis,
Hypertension
Care
M.D.
M.D.
Lorinda Chung, M.D.
Sheetal Desai, M.D.
M.D., M.P.H.
Laura Hummers,
M.D.
M.D.
Dane Christiansen
Rosemary Markoff
19
Linda Lee Wells Education Workshop Descriptions
African Americans and Scleroderma Studies have suggested that African Americans suffer more severely with scleroderma and its
complications. Come listen to a scleroderma expert with a particular interest in treating this population.
NEW in 2014 Are Endogenous or Marijuana-derived Cannabinoids Potential Therapeutics for Scleroderma? The body produces several
cannabinoids (a class of biologically active compounds also found in cannabis sativa, or marijuana) that affect the function of cells in the
brain and in most tissues of the body by binding to structures on cells called receptors. These cannabinoids and receptors (called CB1 and
CB2) make up the “endocannabinoid system.” In this session, learn how the endocannabinoid system regulates blood vessel constriction
and about functions of the immune system and fibrosis with particular relevance to systemic sclerosis. The potential for drugs derived from
non-psychoactive cannabinoids as therapeutics to treat pulmonary arterial hypertension, autoimmunity and fibrosis will be discussed.
Assisted Yoga for Scleroderma A therapeutic program of yoga poses and breathing techniques selected for their benefit to those more
severely affected with the symptoms of scleroderma. This practice consists of a sequence of seated and reclining exercises with special
emphasis on breathing techniques. All are performed with the assistance of a caregiver, with complete instruction for both the individual and
the caregiver. All can be done while sitting on the edge of or lying on a bed. This program by Kathy Randolph is available on DVD, distributed
exclusively as a fundraiser by the Scleroderma Foundation.
NEW in 2014 The Brain and Brain Function in Scleroderma While the occurrence of overt stroke is not much different between patients
with systemic sclerosis and the general population, patients with systemic sclerosis do complain of memory loss, diminished mental acuity,
disorientation and depression. Studies using different ways to measure blood flow to regions of the brain report about half of patients with
systemic sclerosis with no neurologic symptoms have reduced circulation of blood to parts of the brain and brain function deficits. In this
session, the basis for the reduced blood supply to the brain and the different mental functional problems in patients with systemic sclerosis
will be discussed.
NEW in 2014 Calcinosis in Dermatomyositis and Scleroderma In this session, the presenter will provide a summary of recently published
literature about calcinosis in patients with dermatomyositis and scleroderma. The presenter will describe the frequency of calcinosis in
these diseases, and the clinical features associated with the development of calcinosis. There also will be a discussion about medical and
surgical therapeutic options for calcinosis.
NEW in 2014 Capillaroscopy Basics: What the New Criteria Means for You This session will cover what capillaroscopy is and how it
is used in clinic. After a brief overview of capillaroscopy, participants will be allowed to look at capillaroscopy equipment and have their
nailfolds examined.
Caregiving 101 Loved ones who provide care for scleroderma patients face a unique set of physical, emotional and cognitive challenges.
This session focuses on the caregiving experience and on implementing different types of coping strategies. Attendees will learn to identify
personal strengths and challenges of their situations and what can be done to stay healthy while caring for another person. Though the
focus of this session is on caregivers, patients interested in learning more about the caregiver’s perspective are very welcome to attend.
NEW in 2014 Classification and Staging of Scleroderma Using Skin Thickness and Blood Antibodies Every systemic sclerosis (SSc) patient
and managing physician should know his/her subtype (diffuse, limited) and disease stage (early, late) as well as SSc-associated blood
antibody. Using these three pieces of information, it is possible for both the physician and patient to predict what might happen in the future
regarding SSc-related internal organ damage and to develop a proper program to monitor for such complications.
20
NEW in 2014 Demystifying the Pharmacy World Information for prescription drugs, herbs and over-the-counter medications is available
everywhere. What is truth, and what information is false or misleading? How do you tell the difference? This workshop is designed to be an
interactive learning environment to address these questions and other common misconceptions about drugs, insurance, and the role you
and your pharmacist play in your medical team. Please bring your questions, an open mind, and a fun spirit to this interactive workshop.
Diagnostic Testing in Scleroderma This session will describe the various tests performed by medical providers for patients with systemic
sclerosis, including when the tests are indicated and what they tell us. This course is designed to prepare patients to better understand the
tests their doctors order so they will be better prepared to be their own best advocates.
NEW in 2014 Does Appearance Matter? Today’s society places enormous importance on appearance and messages associating physical
attractiveness and happiness are pervasive. This session considers the psychosocial issues around appearance, in particular the
experiences of people whose appearance is unusual or different to “the norm” because of accidents, medical treatment or conditions such
as scleroderma. The workshop looks to dispel the “beauty myths,” and in particular the commonly held belief that having an unusual
appearance is bound to be a negative experience. It will discuss the challenges that often face people who look different in any way,
consider why some individuals manage these challenges very well while others do not, and highlight some recent developments in the
provision of support for those who are finding it harder to cope with an altered appearance.
NEW in 2014 “Does It Hurt?” Explaining Your Illness to Your Children In this workshop, the presenter will discuss how to explain your
diagnosis and illness to your children. She will focus on children and adolescents still living at home, but will also discuss communication
with children at all ages and developmental levels, including those who are now adults.
Dry Eyes and Dry Mouth: What Do Venus Williams and Scleroderma Have in Common? Patients with scleroderma often suffer from dry
eyes and dry mouth. In this session, we will discuss why this occurs, how it may manifest itself and what you can do to help relieve the
symptoms.
Eating Well with Scleroderma The presentation will discuss the basics of eating well; dietary modifications for stomach and intestine
problems; media, marketing and misinformation about foods and diets; and how to decide what new diet strategies you should try.
WO R K S H O P D E S C R I P T I O N S
NEW in 2014 Common Sleep Disorders and Scleroderma: An Overview This workshop will provide an overview of the nature of sleep,
common sleep disorders and factors that may impact sleep in people with scleroderma. In addition, there will be a brief review about
various drug and non-drug treatments for these problems.
NEW in 2014 Effective Grassroots Advocacy: Using Your Voice to Advance Research and Improve Care The community of individuals
affected by scleroderma has been effective in educating lawmakers about the condition and securing support for increasing research and
improving patient access to quality care. Learn how you can join the cause and lend your voice to coordinated efforts that help advance
legislative and policy issues. You don’t need any prior expertise in civics or government, just an interest in telling your story.
Emerging Therapies in Scleroderma This session will discuss the latest developments in scleroderma treatment including current and
experimental therapies. New pathways that are currently being targeted for therapy also will be discussed.
For Men Only: The Medical Aspects of Scleroderma
epidemiology and clinical aspects of the disease.
The presenter will discuss male gender-specific aspects of scleroderma, including
21
NEW in 2014 For Men Only: The Psychological Effects of Scleroderma Scleroderma can pose a threat to your feeling like a man in many
ways. It can affect your role as a friend, husband, father, sportsman and provider. In this workshop, we will focus on this subject and will
discuss how you can deal with this challenge and be a man living with scleroderma. Making a distinction between “doing” goals and “being”
goals can be helpful.
NEW in 2014 Hand Involvement The goal of this workshop is to provide scleroderma patients with an understanding of the common
problems associated with their hands. The goal is to give patients enough understanding and background to make informed decisions with
his or her providers when considering the best care for one’s hands.
Hand and Face Exercises and Management of Daily Skills: An Occupational Therapy Perspective In this session, participants will learn
about modalities and exercises to improve movement and function in the hands, face and mouth. Suggestions also will be provided about
the use of assistive devices and alternate techniques to accomplish tasks of daily living to protect the hands or when patients have limited
finger mobility.
NEW in 2014 Healthcare Reform: Opportunities and Challenges in a Changing Insurance Marketplace This presentation focuses on
changes to private insurance as a result of the enactment of the Affordable Care Act. As insurance companies and federal regulators work
to expand access, new issues have emerged for individuals affected by chronic or costly medical conditions. While everyone’s insurance
options are unique to his/her situation, learn about the new mandates, coverage options, and potential pitfalls for exchange-offered
insurance plans.
NEW in 2014 How Does Scleroderma Cause Musculoskeletal and Nerve Pain? This workshop will focus on the causes of joint, muscle
and nerve pain in persons living with scleroderma. Scleroderma-related arthritis and different forms of muscle and nerve involvement in
scleroderma will be presented. Lastly, the existing treatment options for these conditions will be discussed.
Is a Gluten-Free Diet Effective for Scleroderma Patients? Many think going gluten-free means doing the “newest fad diet.” In reality, it could
be one of the best things you can do for yourself. Gluten has been associated with fibromyalgia, rheumatoid arthritis, Sjogren Syndrome,
systemic lupus and other autoimmune disorders. If you have gastrointestinal (GI) involvement due to scleroderma, adopting a gluten-free
diet may reduce GI-related symptoms, muscle aches and pains. In this presentation, we will discuss how gluten affects the body, how it is
linked to scleroderma, why it’s important to stay gluten-free, and how to find tasty, healthy gluten-free foods.
JUVENILE WORKSHOP AND ACTIVITIES
Please visit pages 16-17 for detailed descriptions
NEW in 2014 Kidney Involvement in Systemic Sclerosis At the end the lecture, participants will have an understanding about the basics of
kidney functionality, including how the organ works to eliminate the body’s waste products in healthy individuals and how that can change
in people with systemic sclerosis, also known as scleroderma. The speaker will discuss different ways that the kidneys can show mildly
abnormal function in people with scleroderma; what scleroderma renal crisis is, how it is diagnosed and how it is treated; what is kidney
vasculitis, how it is diagnosed and how it is treated; and information about kidney transplants for people living with scleroderma.
NEW in 2014 Living Well With Scleroderma: How We Do It
of people who have the disease and have persevered.
Find out what it takes for you to live well with scleroderma from a diverse panel
NEW in 2014 Lupus and Other Overlapping Diseases Many patients with scleroderma have overlapping features of other rheumatic
disorders. This includes systemic lupus, Sjogren Syndrome, antiphospholipid syndrome and inflammatory myositis. These conditions
encompass individuals who are said to have “undifferentiated connective tissue disease,” “mixed connective tissue disease,” or “overlap
syndrome.” This workshop will describe and define these entities and put them into contexts about diagnosis and treatment.
22
Medical Emergency Readiness and Visiting the ER: What You Need to Know This workshop will focus on tips to help you successfully
navigate the hospital system from an initial emergency room visit through an inpatient stay. Key questions that will be reviewed include:
What information should you have available/accessible about your illness and treatment preferences? Who are the hospital staff you will
encounter and how can they help you? How can you be proactive about your care in the hospital?
MELT Your Hands Tap into your connective tissue and nervous system with the MELT Method. In this session, you will learn easy
techniques that alleviate pain, inflammation, tension and stiffness in your hands and feet using a soft ball treatment. You also will learn an
effective breathing technique to quiet the stress in the body and help you breathe deeper.
NEW in 2014 The Molecular and Cellular Profile of Morphea Morphea (localized scleroderma) is an inflammatory disorder that causes
thickening and hardening of affected skin due to excessive deposition of collagen and extracellular matrix. More than 50 percent of those
affected are children. Due to their growth, children are particularly afflicted with functional and cosmetic impairment resulting from morphea.
Despite an estimated prevalence similar to type I diabetes mellitus, there are no large-scale studies to examine the pathogenesis of morphea,
making therapeutic development difficult. Until recently, there hasn’t been a large, well-characterized group of patients available for study.
In this session, you will learn about the Morphea in Adults and Children (MAC) cohort, which is designed to examine and study morphea’s
pathogenesis.
OPENING AND CLOSING KEYNOTES
See page 7 for descriptions.
NEW in 2014 Pain: The Causes and Treatment of Pain in Scleroderma Pain is a persistent and difficult problem in scleroderma, affecting
function in multiple ways. This workshop will examine the many ways pain arises, from our muscles, tendons, joints, internal organs and
brain. The treatments are as varied as the causes, and we will try to approach some of the ways to deal with living with scleroderma, both
with medicines and non-medicinal approaches.
NEW in 2014 Perspective: What You Can Do to Help Manage Your Disease This session will help you learn how to effectively manage your
disease. It will include talking to your doctor, the importance of exercise, taking your meds as prescribed, and the value of a positive attitude.
The importance of support group and clinical trials will also be discussed.
WO R K S H O P D E S C R I P T I O N S
Managing Gastrointestinal (GI) Involvement in Scleroderma People with scleroderma may develop abnormalities of the gastrointestinal (GI)
tract. Any part of the GI tract can be involved in scleroderma, including the mouth, esophagus, stomach, and small and large intestines. In
this session, improve your understanding of how to treat and manage gastrointestinal tract problems in scleroderma.
NEW in 2014 Prediction of Progression and Complications in Scleroderma Systemic sclerosis is a complex, multisystem disease with
a significant variability from patient-to-patient. This session will focus on what is known about ways we may better predict who will have
specific complications in the future or who will have progression of common manifestations, such as lung fibrosis.
Pregnancy Issues in Scleroderma In this session, the presenter will discuss the current knowledge regarding pregnancy issues in
scleroderma, including fertility, pregnancy course and maternal outcomes. There also will be discussion about managing scleroderma
symptoms during pregnancy.
The Psychological Impacts of Scleroderma People living with scleroderma know that its effects are not solely physical. In this session,
we will examine some of the obvious and the not-so-obvious effects that living with scleroderma may have on your emotions, behavior,
relationships and general mental health. Attendees will learn to identify personal challenges of living with the illness, and learn new ways to
cope with the psychological impacts of scleroderma.
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Pulmonary Arterial Hypertension (Grand Lecture) In this lecture, we will review the three different types of pulmonary hypertension,
which can affect patients with systemic sclerosis. We will then discuss screening and diagnosis of all types of pulmonary hypertension,
and prognosis if a patient is diagnosed today. We will end by focusing on the treatment of pulmonary hypertension, including nonpharmacologic therapy, the increasing number of drug treatments available, and the importance of multidisciplinary care of the scleroderma
patient with pulmonary hypertension.
NEW in 2014 Pulmonary Fibrosis in Systemic Sclerosis: Diagnosis and Management Pulmonary fibrosis (PF) affects many people with
systemic sclerosis. Learn about its symptoms and the different types of tests performed to diagnose PF. A scleroderma expert will discuss
treatments and review recent research findings and medications being used to treat this condition.
NEW in 2014 Raynaud Phenomenon and Raynaud Crisis
increased awareness of Raynaud Crisis.
We will review the features of Raynaud Phenomenon, its management, and an
NEW in 2014 Restore Yourself Wherever You Are, Whatever You’re Doing The speaker will introduce a series of on-the-spot techniques to
help you access your most clear, relaxed and refreshed self wherever you happen to be. These techniques have been used to improve sleep
and mental capacity as well as reduce pain, nausea, depression and anxiety. Session participants will practice these techniques and will be
able to share these techniques with their local support group members.
Scleroderma 101 Scleroderma 101 is an introduction to the disease and to the basic terminology, tests and treatments that are typically
part of disease management. It is meant to be an interactive session with audience participation and discussion.
NEW in 2014 Scleroderma and Incontinence: What You Need to Know In this session, we will discuss the types of urinary and fecal
incontinence, and how they are related to scleroderma. Practical approaches to manage incontinence and maintain skin care while
optimizing quality of life also will be discussed.
Scleroderma Patient-centered Intervention Network (SPIN): An International Patient-researcher Partnership People with many chronic
diseases count on psychosocial and rehabilitation interventions to help them manage and cope with their disease. These kinds of supportive
interventions, however, have not been designed and tested to meet the specific needs of people with rare diseases, like scleroderma. Patient
organizations from the United States, Canada and Europe have worked together with top researchers from around the world to change
this. The Scleroderma Patient-centered Intervention Network (SPIN) is a collaboration with the goal to develop and test internet-based
interventions to help people with scleroderma cope with important problems, such as hand contractures and limited hand function, stress,
and body image concerns due to changes in appearance from scleroderma. The presenters will describe how people with scleroderma have
worked together with researchers to make SPIN a reality and will discuss current and future opportunities to become involved with SPIN.
NEW in 2014 Stem Cell Transplant: A Patient’s Perspective Hematopioetic stem cell transplants (HSCT) is showing a lot of promise in the
treatment of aggressive scleroderma. In this session, hear from a patient and her husband about what HSCT is and is not, their decision to
pursue HSCT, how they chose the clinical trial route, and about the experience itself from evaluation through recovery.
NEW in 2014 Team Approach to Pro-Active Treatment Systemic sclerosis (SSc) is one of the most complex conditions, which can
commonly affect several organ systems in the same person. People living with SSc must cope with many hard-to-treat symptoms that can
extremely impact a person’s quality of life. The goals of a Scleroderma Center of Excellence are to improve patient health through research
and, perhaps more importantly, the delivery of expert personal care to patients. This interactive session will examine SSc from a patientcentered and symptom/system-based approach to care with identification of key healthcare professionals in the Best Health Paradigm. This
workshop focuses on developing a proactive partnership between the patient and medical communities.
24
This session will discuss treatment for rapidly evolving skin disease. Therapies and
NEW in 2014 Vascular Disease in Scleroderma: Beyond Raynaud and Pulmonary Hypertension While scleroderma is frequently associated
with fibrosis (scarring) as a major complication, vascular abnormalities are quite common. Some vascular disease is quite evident, such
as Raynaud phenomenon, but vascular disease may contribute to other complications of scleroderma, as well. This session will focus on
involvement of blood vessels across all aspects of scleroderma.
NEW in 2014 What Can Aromatherapy Do for Scleroderma? This workshop will feature several informational and interactive stations that
will include: what is aromatherapy; can you match the essential oil to its scent; Raynaud Phenomenon and aromatherapy; essential oil first
aid kit and more. The various stations format will allow participants to rest or be more involved depending on their individual need.
NEW in 2014 What’s All the Hype? Social Media and Scleroderma In this talk, the speaker will provide an overview about the basics
of social media and the scleroderma community. What is social media and how are scleroderma patients using it? How do I find health
information that is credible and useful? How do I get the most from blogs and discussion groups? What tips should I know about the Inspire
discussion board, Twitter, Facebook, YouTube and Pinterest?
NEW in 2014 What the Doctor Should Have Told Me About Scleroderma During My First Consult Visit…and Finished on the Second Visit At
the end of this session, participants should be able to answer five of the most important questions that should have been answered by
the doctor during a primary consultation: 1. Do I have scleroderma? 2. When did my scleroderma begin (a fact needed to help predict the
future)? 3. How is my skin thickening going to change? 4. What visceral involvements (heart, lung, kidney, GI) do I currently have? 5. What
are the probabilities that I will develop visceral involvements over time?
NEW in 2014 What to Think About If You Have Scleroderma and Pulmonary Arterial Hypertension In this session, attendees will learn more
about pulmonary arterial hypertension (PAH) symptoms, how PAH is diagnosed, treatment options available, and the research being done.
What Your Dentist Wants to Know About Scleroderma There is a relationship between the dentist’s knowledge of scleroderma and their
confidence treating patients with scleroderma. In this session, the presenter will discuss what your dentist would like to know about
scleroderma and your condition. Additionally, there will be a report about current dental education about scleroderma and rheumatic
diseases.
NEW in 2014 When Scleroderma Comes Between Us In this talk, the presenter will discuss the psychosocial challenges both partners
face in the presence of scleroderma. The speaker will propose some solutions to help partners deal with challenges and issues in a healthy
manner.
WO R K S H O P D E S C R I P T I O N S
NEW in 2014 Treatment of Early, Diffuse Skin Disease
diagnostics also will be discussed.
Yoga for Scleroderma A therapeutic program of yoga poses and breathing techniques selected to benefit the symptoms of scleroderma.
This practice consists of a sequence of reclining exercises, standing poses, inverted postures, and breathing and relaxation techniques. All
exercises are performed with modifications for physical limitations associated with scleroderma, and can be done while sitting on the edge
of or lying on a bed. This program by Kathy Randolph also is available on DVD from the Scleroderma Foundation.
Yoga for Your Hands This session will provide an opportunity to try an entire program for increased circulation, stretching and mobility for
your hands. This practice will include handwork from “Yoga for Scleroderma” and “Assisted Yoga for Scleroderma” all in one class. There
also will be new material for hands and wrists, and lots of focus on symptom relief for Raynaud phenomenon. This program is completed
while the participant is seated, so come as you are!
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Science For A Better Life
Innovative research,
education and support:
Bayer is committed to advancing
science for individuals living with
cardiopulmonary diseases.
BAYER and the Bayer Cross are registered trademarks of Bayer.
Bayer HealthCare LLC
100 Bayer Boulevard, Whippany, NJ 07981 USA
©2014 Bayer HealthCare Inc.
400-10-0004-14 July 2014
27
REGISTRATION
Contributors and Exhibitors
2K Innovations/ H2C Brands, LLC
Actelion Pharmaceuticals US, Inc.
Arnel’s Originals
Amenity Health, Inc.
Bard’s Gluten Free Beer
Bayer HealthCare
Caring Voice Coalition
Celiac Disease Foundation
The Chronic Disease Solution Center, LLC
CoachArt
Coconut Bliss
Constantine Creations - Robert Avila
Dearjohnnies
DinerWear.com
Garden of Life
Gilead Sciences, Inc.
Genentech, Inc.
Laclede, Inc.
MedActive Oral Pharmaceuticals, LLC
NeilMed Pharmaceuticals, Inc.
OraCoat - Xylimelts
Originals by Weber
Pascha Chocolates
Pulmonary Fibrosis Foundation
Pulmonary Hypertension Association
Scleroderma Foundation Advocacy Committee
Scleroderma Foundation Southern California Chapter
Speedlaces
Trilogy Financial Services
Udi’s Gluten Free
United Therapeutics Corporation
28
Exhibitor Adventure!
Continue your learning experience in the
Exhibit Hall! Located in your name badge
lanyard is an “Exhibitor Adventure” card.
“The Exhibitor Adventure” is an activity
developed to encourage all attendees to visit
the exhibit hall during the 2014 Conference.
Our sponsors’ and exhibitors’ support make
this conference possible. Please show your
gratitude by visiting their booths.
Just have each exhibitor sign off in the
appropriate box on the card. Once your card
is complete, sign and turn into the registration
booth for a chance to win a $50 gift card!
The drawing will be held at the end of the
conference and the winner will be notified
within one week.
Up to 1 in 6 people living with scleroderma may be diagnosed with pulmonary arterial hypertension (PAH).1
An online resource designed for people
living with PAH
www.InsightsOnPAH.com
InsightsOnPAH.com was developed to help you learn more
about PAH, including its signs and symptoms, how PAH is
diagnosed, options for treatment, and useful tips for living
with PAH. A variety of materials are available to download—
visit InsightsOnPAH.com to learn more about PAH.
Insights is an educational program designed exclusively for
individuals with pulmonary arterial hypertension and those
who care for them—brought to you by Gilead Sciences, Inc.
Reference: 1. McGoon M, Gutterman D, Steen V, et al. Screening, early detection, and diagnosis of pulmonary arterial hypertension: ACCP evidence-based clinical practice guidelines. Chest. 2004;126(1, suppl):14S-34S.
© 2012 Gilead Sciences, Inc. All rights reserved. Gilead and the Gilead logo are trademarks of Gilead Sciences, Inc. UN13612 June 2012
25
Special Thanks
30
Southern California Chapter Planning Committee
Walter A. Coyle Memorial Scholarship Fund
Jerold D. Kappel, Interim Executive Director
Josephine Battyany, “The Boss”
Kim Frost, Volunteer Coordinator
Kelly Davidson, San Diego Chapter Executive Director
Actelion Pharmaceuticals US, Inc., Gilead Sciences, Inc., Bill and Joi
Goodbread, Susan Marie Scleroderma Foundation, New England
Chapter, Missouri Chapter, South Carolina Chapter, Tri-State Chapter,
2013 National Conference raf le ticket sales, and many individual
donors.
Scleroderma Foundation Conference Planning Team
Kerri A. Connolly, Conference Director
Mary Ann Berman, Team Support
Kate Bresnahan, Team Support
Ryan Burrill, Venue Logistics Coordinator
Shenna Gianetta, Team Support
Laura Koumarianos, Accounting Support
Linda Norris, Registration Support
Christina Relacion, Publicity Support
Robert J. Riggs, Team Leader
Irena Shuruyeva, Accounting Support
Tracey O. Sperry, Scholarship/Sponsor/Registration Leader
Anne Sweeney, Team Support/Chapter Liaison
Maureen Zuluaga, Registration Support
Additional Thanks To
Scleroderma Foundation National Board of Directors
Board of Directors and members of the Scleroderma
Foundation Southern California Chapter
The Estate of Linda Lee Wells
Health and Medicine Counsel of Washington, D.C.
Walt Disney Company®
Encore Technology
LaPlume & Sons Printing
Scleroderma Foundation
Advocacy
tEXT
hERE. Committee
Scleroderma Patient-Centered Intervention Network (SPIN)
Brett Thombs, Ph.D.
Linda Kwakkenbos, Ph.D.
The Management and Staff of the Anaheim Marriott
Anaheim Convention & Visitors Bureau
Sp e c i a l T h a n k s To Ou r
C o n f e re n c e Vo l u n t e e r s
A special debt of gratitude is owed to the
wonderful corps of volunteers who have given
countless hours and talent to help with the
logistics of this conference. On behalf of all
conference attendees, we thank you!
31
National Leadership
Medical Advisory Board
Board of Directors
Steering Committee
John Varga, M.D., Chair
Maureen D. Mayes, M.D., M.P.H.
Richard Silver, M.D.
Virginia Steen, M.D.
Joseph Camerino, Ph.D., Chair
Carol Feghali-Bostwick, Ph.D.,
Vice Chair
Mary Blades
Marie Coyle
James Evans
Lee Roy Jones
Robert Kacick
Cos Mallozzi
Greg Marion
Robert Slappey
Members
Carol Black, M.D.
Lorinda Chung, M.D.
Philip Clements, M.D.
Aryeh Fischer, M.D.
Tracy Frech, M.D.
Daniel Furst, M.D.
Jessica Gordon, M.D.
Laura Hummers, M.D.
Dinesh Khanna, M.D., M.S.
Robert Lafyatis, M.D.
Thomas A. Medsger, Jr., M.D.
Janet Pope, M.D.
Robert F. Spiera, M.D.
Sergio Jiminez., M.D.
Arnold Postlethwaite, M.D.
Members Emeriti
Frank Arnett, M.D.
Michael Ellman, M.D.
Frederick Wigley, M.D.
National Staff
Robert J. Riggs
Chief Executive Of icer
rriggs@scleroderma.org
Kerri A. Connolly
Director of Programs and Services
kconnolly@scleroderma.org
Tracey O’Connell Sperry
Director of Development and Research
tsperry@scleroderma.org
Mary Ann Berman
Of ice Assistant
maberman@scleroderma.org
Linda Norris
Database Administrator
lnorris@scleroderma.org
Kate Bresnahan
Communications Associate
kbresnahan@scleroderma.org
Christina Relacion
Communications Manager
crelacion@scleroderma.org
Ryan Burrill
Programs and Services
Coordinator
rburrill@scleroderma.org
Irena Shuruyeva
Accounting Assistant
ishuruyeva@scleroderma.org
Anne Sweeney
National Chapter Relations Manager
asweeney@scleroderma.org
Shenna Gianetta
Executive Assistant
sgianetta@scleroderma.org
Laura Koumarianos
Senior Accountant
lkoumarianos@scleroderma.org
Maureen Zuluaga
Senior Database Administrator
mzuluaga@scleroderma.org
Contact Us
Contact the National Of ice at (800) 722-HOPE (4673)
or visit www.scleroderma.org. You may also email
s info@scleroderma.org. Our mailing address is:
300 Rosewood Drive, Suite 105
Danvers, MA 01923
32
The work of the Scleroderma Foundation could not reach the people who need our assistance most
without the tireless efforts of our volunteers and staff in chapters across the countr y.
CHAPTERS BY STATE
Colorado Rocky Mountain Chapter
(303) 806-6686
www.scleroderma.org/colorado
Michigan Chapter
(248) 595-8526
www.scleroderma.org/michigan
Southern California Chapter
(310) 287-0793
www.scleroderma.org/socal
Delaware Valley Chapter
Delaware, Eastern Pennsylvania, Southern
New Jersey
(866) 675-5545
www.scleroderma.org/delawarevalley
Minnesota Chapter
(877) 794-0347
www.scleroderma.org/minnesota
South Carolina Chapter
(864) 617-0237
www.scleroderma.org/southcarolina
Missouri Chapter
(417) 887-3269
www.scleroderma.org/missouri
Southeast Florida Chapter
(954) 798-1854
www.scleroderma.org/se l
New England Chapter
Maine, Massachusetts, New Hampshire,
Rhode Island, Vermont
(888) 525-0658
www.scleroderma.org/newengland
Tennessee Chapter
(800) 497-5193
www.scleroderma.org/tennessee
Georgia Chapter
(770) 925-7037
www.scleroderma.org/georgia
Greater Chicago Chapter
Illinois, Indiana, Iowa, Wisconsin
(312) 660-1131
www.scleroderma.org/chicago
Greater San Diego Chapter
(619) 655-4342
www.scleroderma.org/sandiego
Greater Washington, D.C. Chapter
District of Columbia, Maryland, Virginia
(202) 999-4562
www.scleroderma.org/dc
Heartland Chapter
Iowa, Nebraska, South Dakota
(515) 661-8089
www.scleroderma.org/heartland
Northern California Chapter
(916) 832-1102
www.scleroderma.org/norcal
Texas Bluebonnet Chapter
(866) 532-7673
www.scleroderma.org/texas
Ohio Chapter
(866) 849-9030
www.scleroderma.org/ohio
Tri-State Chapter
Connecticut, Northern New Jersey,
New York
(800) 867-0885
www.scleroderma.org/tristate
Oklahoma Chapter
(405) 213-9230
www.scleroderma.org/oklahoma
Western Pennsylvania Chapter
(800) 722-HOPE
www.scleroderma.org/wpenn
Oregon Chapter
(503) 245-4588 or
(405) 694-1098
www.scleroderma.org/oregon
Washington Evergreen Chapter
(206) 285-9822
www.scleroderma.org/washington
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CONTINUING OUR LEADERSHIP
AND COMMITMENT TO PAH
LEARN.
CONNECT.
SUPPORT.
Supporting the scleroderma community.
Stop by the Actelion booth to have your picture taken and
share a message in support of the scleroderma community.
All participants will be able to take their photo home as a
special keepsake.
Actual photo and frame may differ from what is shown above.
© 2014 Actelion Pharmaceuticals US, Inc. All rights reserved.
ACT-00550 0714
Proud National Gold Sponsor
of the Scleroderma Foundation
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