9:15-9:50am Dr. John Lloyd-Still, Children's Memorial
Hospital
10:00-10:55am Chosen Few Improv
11:10-12:20am Dr. Bruce Axelrod, Pediatrician/Psychiatrist
Luncheon Address: Steven Scheiger, President, Greater Illinois Chapter
1. CF Spouses
2. Nutrition/Target 100 Movie
3. Career Choices
4. School Problems - Bob Jacobson from School District 207
5. Parent Panel
6. Exercise
7. Newly Diagnosed
9:15-10:00am Dr. Whitney Addington and Joe Kowalski
10:30-11:15am Parent Panel (parents with children diagnosed at an early age)
11:30-12:30am Independence and Autonomy in CF patients (regarding ages 16
-18, 18 -25, 25+)
1. Parental Stress
2. Social Services
3. Exercise & Nutrition
4. Adult Issues (teens - 20)
5. Adult Issues (21+)
6. Sibling Panel
9:15-9:50am CHIPS Program (Illinois' Comprehensive Health
Insurance Plan)
10:00-10:40am Chosen Few Improv
10:40-10:55am Tae Kwon Do Demonstration
11:10-12:20pm Robert Beall, PhD, Vice President for Medical Affairs, CFF
Luncheon Speaker: Steven Schwieger, President, Greater Illinois Chapter
1. Newly Diagnosed
2. Nutrition/Target 100 Movie
3. Exercise: Tae Kwon Do
4. Relative Panel
5. Dealing with Death & Dying
6. Stress Management
9:15-9:50am Dr. Lucille Lester, Wyler's Clinic
10:00-10:30am Personal Messages
10:45-12:00pm Research Update
1. Newly Diagnosed
2. CF & Secondary Conditions
3. Taw Kwon Do
4. Home Health Care
5. CF Parents
6. Travel - How Challenging is it?
7. Fathers Only
8. Nutrition
9:30-10:30am Research Updates
10:45-11:30am Stress Management Program
1. Newly Diagnosed
2. Physical Exercise
3. Solutions to Problems caused by the environment
4. Updates on the Digestive System
5. Nutrition
6. Group Discussion for parents and spouses
7. Sibling Issues
8:30-9:00am Registration
9:00-9:15am Welcome Address
9:15-10:15am Research Updates - presented by Dr. Robert Beall, Executive
Vice President for Medical Affairs, Cystic Fibrosis Foundation
10:30-11:30am CF Adult Panel
11:30-1:00pm Break and Lunch
1:15-2:15pm and 2:30-3:30pm
1. Newly Diagnosed
2. Genetics of CF
3. Organ Transplants
4. Sibling Issues
5. Nutrition and Exercise
6. Insurance Concerns
7. Stress Management
3:30-4:00pm Evaluation
last updated June 30, 2006
We have no program for 1993--do you?
8:30 - 9:00am Registration
9:00 - 9:15am Welcome Address by Maureen Garvey, RN, BSN, Medical Advisor
to the Chicagoland Adult Cystic Fibrosis Association
9:15 - 10:15am CF Research Update - presented
by Arvey Stone, MD, Associate Director of Pulmonary Medicine, Cystic Fibrosis
Adult Clinic, Lutheran
General Hospital
10:15 - 10:30am Break
10:30 - 11:30am Pulmozyme: The Suspense is Over
Panel of patients who have been using the secretion thinning drug since FDA
approval - facilitated
by Missy
Campbell, Social Worker, Loyola Medical Center, and by: Jeannine Cheatham,
MS, RN, Wyler Children's Hospital
11:30 - 12:00pm Break
12:00 - 1:15pm Luncheon Address by Steven Schwieger, President,
Greater Illinois
Chapter, Cystic Fibrosis Foundation
1:15-2:15 and 2:30-3:30
Concurrent Small Group Discussions:
1. Ask an Adult Paul Mooney (28), Bob Tate (29), and Rosie Woods (33)
2. Child's Perspective of CF - presented by Denise Angst, PhD. Dr. Angst
has been a nurse specialist since 1983. She is a Clinical Research Associate
at Lutheran
General Hospital.
3. Concerns for Parents of School-Aged Children - led by Cathy
Schultz, RN, Family
Care Coordinator, Children's Memorial Hospital.
4. Just For Teens Organized by Beth Peters, a 14 year old CF patient. Missy
Campbell, Social Worker at Loyola Medical Center will be available as a resource
person.
5. New Lungs = New Life. A panel of lung transplantation team specialists
and recipients.
The doctors:
Edward Garrity,
Jr. MD, Medical Director Lung Transplantation Program, Loyola University
Medical Center, and
K. Mawulawde,
MD, Thoracic Cardiovascular Surgeon, Loyola University Medical Center.
The
lung recipients: Mike Ceglarski (3/13/94), Dawn Hilt (3/7/93), Cindy
Kaleta (2/10/94), Ralene Lackscheide (3/18/94), Mike Maggio (4/91), Nancy
Nashaar
(9/20/93), and Carl Spiotto (6/9/93)
6. Newly Diagnosed - led by Barbara Blue, RN, MSN, Lutheran General Hospital.
7. Nutrition and Exercise: The Upper Hand on CF - led by: Maureen Garvey,
BSN, RN, and Patty Morse, RD. Maureen Garvey is the coordinator of the
Cystic
Fibrosis
Center at Loyola University Medical Center. Patty Morse is a Registered Dietitian
at Loyola University Medical Center.
8. Alternative Chest Physiotherapy Techniques - led by Dr. Youngran Chung
and Connie Puerkel, CRT. Dr. Chung is Director of Pediatric Pulmonology and
Co-director
of the Cystic Fibrosis Center at Lutheran General Children's Hospital. Connie
Puerkel joined the Lutheran General CF Clinic in 1998 as the Care Team's
Respiratory
Therapist.
3:30 - 4:00pm Evaluation
8:30 - 9:00am Registration
9:00 - 9:15am Welcome Address
9:15 - 10:15am CF Research Update - presented
by Jerome Kraut, MD, Director CF Center, Lutheran General Hospital
10:15 - 10:30am Break
10:30 - 11:30am Gastrointestinal Concerns -
presented by Harold Conrad, MD, Director CF Center, Loyola University Medical
Center
12:00 - 1:15pm Lunch
1:15 - 2:15pm Lung Transplantation
- presented by Loyola Lung Transplantation Team
1:15 - 2:15pm Adult Issues - presented by Janice
Tate, Coordinator Adult Issues, and Barbara Blue, MSN, CF Research Nurse,
Lutheran General Hospital
1:15 - 2:15pm New Therapies, New Challenges:
The Impact on Individuals & Families
- presented by Denise Angst, DNSC, Clinical Research Associate, Lutheran
General Hospital
1:15 - 2:15pm Nutrition by Stages and Ages -
presented by Eileen Potter, MS, RD, CS, Dietitian, Children's Memorial Hospital
1:15 - 2:15pm Diabetes and Cystic Fibrosis -
presented by Beverly Henry, MS, RD, CS and by Gail Kellberg, MSN, Loyola
University
Medical Center
2:15 - 2:30pm Break
2:30 - 3:30pm Lung Transplantation - presented
by Loyola Lung Transplantation Team
2:30 - 3:30pm Genetic Counseling Issues presented by: Leslie Geibel, MS, Wyler
Children's Hospital
2:30 - 3:30pm Helping Children Manage Their Own Care - presented by Jeannine
Cheatam,
MS, RN, CF Nurse Administrator, Wyler Children's Hospital
2:30 - 3:30pm Newly Diagnosed - presented by
Barbara Blue, MSN, CF Research Nurse,
Lutheran General Hospital
2:30 - 3:30pm CF Teen Issues - presented by
Maureen Garvey, BSN, CF Nurse Coordinator, and Beth Peters, Coordinator
Teen Issues, Loyola University Medical Center
3:30 - 4:00pm Evaluation
8:30 - 9:00am Registration
9:00 - 9:15am Welcome Address by Maureen Garvey, RN, BSN, Medical Advisor
to the Chicagoland Adult Cystic Fibrosis Association
9:15 - 10:15am CF Research Update - presented
by Suzanna Mccolley, MD, FAAP, Director CF Center, Children's Memorial
Medical Center, Chicago, Illinois
10:15 - 10:30am Break
10:30 - 11:30am CF Caregivers Panel - moderated
by Denise Angst, DNSC, Clinical Research Associate, Lutheran General Hospital
Panelists:
1.
Maureen Garvey, BSN, RN,
CF Nurse Coordinator, Loyola University Medical Center
2. Leslie Geibel,
MS, Genetic Counsellor, University of Chicago Hospitals
3. Melanie Gordon, BA, RRT, Respiratory Therapist, Children's Memorial Medical
Center and Lutheran General Hospital
4. Suzanna McColley, MD, FAAP, Director, CF Center, Children's Memorial Medical
Center
5. Catherine Powers, RD, CS, LD, CF Clinical Coordinator,
Nutritionist, Rush-Presbyterian, St. Luke's Medical Center
11:30 - 1:15am Visit exhibits and Lunch
1:15 - 2:15pm Lung Transplantation Panel Discussion - moderated
by the Loyola Lung Transplantation Team. The lung recipients are: Cassie Ditzler, Robert
Festle,
Jim Leman,
Michael
Maggio, Bob Miller,
Nancy Nasharr, Amy Thom and Tony Trofimuk.
1:15 - 2:15pm Adolescent Issues (Parents Only)
- presented by M. Susan Jay, MD and Director, Adolescent Medicine at Loyola
University Medical Center
1:15 - 2:15pm Nutrition and Supplemental Feedings
- presented by Catherine Powers, RD, CS, LD, is the CF Clinical Coordinator,
Nutritionist at Rush-Presbyterian
St.
Luke's
Medical Center.
1:15 - 2:15pm Teen Talk (Teens Only) - moderated
by Beth Peters, Cyndie Baker, a CF
adult,
available as a resource person
1:15 - 2:15pm Newly Diagnosed - presented by
Jeannine Cheatham, RN, MS, CF Nurse Administrator, Wyler Children's Hospital
2:15 - 2:30pm Break
2:30 - 3:30pm Lung Transplantation Panel Discussion
- moderated by the Loyola Lung Transplantation Team. The
lung recipients are: Cassie Ditzler, Robert Festle, Jim Leman, Michael Maggio,
Bob Miller, Nancy Nasharr, Amy Thom and Tony Trofimuk.
2:30 - 3:30pm Adult Issues - moderated
by Janice Tate who is 32 years old, married and a part-time
office worker. Adult panel members: Scott Cherry, 25, Claims Approver; Cynthia Dunafon,
32, studying for doctorate; Paul Feld, 39, Senior Systems Analyst, married
and
a step father; Julie Murphy, 34, married and the parent of three children;
Mike Palmer, 21, Security Guard; and Janet Urbano, 23, Medical Office Assistant.
Alternate Panel Members: Jennifer Manzi, Ken O'Brien and Arnie Witzke
2:30 - 3:30pm Exercise Pays Off - presented
by Steven Boas, MD and Director of the Pulmonary Function and Exercise Lab
at The Children's
Memorial Medical Center
2:30 - 3:30pm Stress & Everyday Living -
moderated by Cyndie Baker , representative
from
American Biosystems and
the National CF Program Director for Motivational Speaking.
2:30 - 3:30pm Open Forum - moderated by Maureen
Garvey, BSN, RN, the CF Nurse Coordinator
at Loyola University Medical Center.
3:30pm Evaluation
We have no program for 1997--do you?
9:30 - 10:00am Registration
10:00 - 10:15am Welcome Address
10:15 - 11:15am CF Research Update - presented by Manu Jain, MD, Director,
Adult CF Services, Northwestern Memorial Hospital
11:15 - 11:30am Break
11:30 - 12:30pm A CF Patient Perspective - presented by Cyndie Baker Mall
12:30 - 2:00pm Lunch
8:30 - 9:00am Registration
9:00 - 9:15am Welcome Address by Maureen Garvey, RN, BSN, Medical Advisor
to the Chicagoland Adult Cystic Fibrosis Association
9:15 - 10:15am CF Research Update - presented
by Girish Sharma, MD, Director, Pulmonary Bronshoscopy, University of
Chicago, Children's Hospital
10:15 - 10:30am Break
10:30 - 11:30am Complementary/Alternative Medicine:
Adjunctive Therapy for CF? - presented by Youngran Chung, MD, Director Pediatric
Pulmonary, Associate Professor,
CF Center,
Lutheran General Children's Hospital Medical Acupuncturist, and R. Charles
Dumont, MD, Pediatric Gastroenterologist, Columbus Children's Hospital,
Ohio State University
12:00 - 1:15pm Lunch
1:15 - 2:15pm Lung Transplantation Information - presented
by Sangeeta M. Bhorade, MD, Assistant Professor of Medicine, Loyola Lung Transplant
Program,
Maywood, Illinois
1:15 - 2:15pm Strategic Approaches to High Calorie Eating - presented by
Jackie Young, RD, Children's Memorial Hospital and Laura A. Smith, RD, CNST,
Northwestern
Hospital
1:15 - 2:15pm Parent Issues: Compliance with Medications and Therapies -
presented by Maureen Garvey, RN, BSN, Loyola University Hospital, Ronald
McDonald Children's Hospital
1:15 - 2:15pm Complementary Medicine Experiences - presented by Janice Tate,
Planning Committee Adult CF Association
2:15 - 2:30pm Break
2:30 - 3:30pm Overcoming Barriers to Leading an Active Life - presented by
Dr. Steven Boas, Associate Medical Director, CF Center, Medical Director,
Pediatric
Lung
Transplant Program, Children's Memorial Hospital
2:30 - 3:30pm Newly Diagnosed - presented by Jeannine Cheatham, RN, MS, CF
Nurse Administrator at University of Chicago Children's Hospital, Chicago,
Illinois
2:30 - 3:30pm When, What and Why: Supplemental Tube Feedings - presented
by Sherry Sparks, RD, Loyola University Hospital
2:30 - 3:30pm Benefits of Massage Therapy and Breathing and Relaxation Techniques
- presented by Robin Doerr, BA, CMT and Ellen Moran, BS, RRT, RPFT, Loyola
University Hospital
3:30 - 4:00pm Evaluation
2:00 - 3:00pm Financial Aspects of CF Care - presented
by Steven Boas, MD, Associate Medical Director, CF Center Medical Director,
Lung Transplant Program, Children's
Memorial Hospital
2:00 - 3:00pm Adult Issues - moderated by Janice Tate
2:00 - 3:00pm Nutrition in CF: Food Facts, Fatigue, & Feedback - presented
by Beverly Hanry, MS, RD, Pediatric Nutrition, Ronald McDonald Children's
Hospital-Loyola
2:00 - 3:00pm Transition from Pediatric to Adult Care - presented by Jeannine
Cheatam, RN, MS, University of Chicago Children's Hospital; and by: Joanne
Cullina, RN, MSN, Northwestern Adult CF Coordinator; and by: Cathy Schultz,
RN, Children's Memorial's CF Nurse Coordinator; and by: Maureen Garvey, RN,
BSN, Loyola University Hospital
2:00 - 3:00pm New Trends - Diabetes - presented by Catherine Powers, RD,
CS, LD, CF Clinical Coordinator, Nutritionist, Rush-Presbyterian, St. Luke's
Medical
Center
3:00 - 3:15pm Break
3:15 - 4:15pm Financial Aspects of CF Care - presented by Steven Boas, MD,
Associate Medical Director, CF Center Medical Director, Lung Transplant Program,
Children's
Memorial Hospital
(Repeat of first session.)
3:15 - 4:15pm CF Diagnosis in Adulthood - presented by Barbara Blue, MSN,
CF Research Nurse, Lutheran General Hospital
3:15 - 4:15pm Teen Talk (Teens Only) - presented by Cathy Zeitz, LCSW, University
of Chicago Children's Hospital
3:15 - 4:15pm Newly Diagnosed - presented by Maureen Garvey, RN, BSN, CF
Nurse Coordinator, Loyola University Medical Center, Ronald McDonald Children's
Hospital
3:15 - 4:15pm School Age Concerns - presented by Jeannine Cheatam, RN, MS,
CF Nurse Administrator, University of Chicago Children's Hospital
4:15 - 4:30pm Evaluation
8:30 - 9:00am Registration
9:00 - 9:10am Welcome Address Maureen Garvey, RN, BSN Cystic Fibrosis Nurse
Coordinator Loyola University Hospital, Ronald McDonald Children's Hospital
Medical Advisor
to the Chicagoland Adult Cystic Fibrosis Association
9:10 - 10:10am Advances in the Treatment of
Cystic Fibrosis - presented by: Susanna McColley, MD, Director, Cystic Fibrosis
Center, Children's Memorial
Hospital
10:10 - 10:20am Break
10:20 - 11:20am Parent/Patient Panel: Adherence
Issues/Life Experiences - moderated by: Carolyn Utech, LCSW, Rush Presbyterian,
St. Luke's Medical Center
11:20 - 11:30am Break
11:30 - 12:30pm Infection Control/Antibiotics
and CF - presented by Lucille Lester, MD, Co-Director, Cystic Fibrosis Center,
Rush Presbyterian,
St. Luke's Medical Center
12:30 - 1:15pm Lunch
1:15 - 2:15pm Alternative Medicine and Cystic Fibrosis:
Potential Benefits-Potential Risks
1. Herbal Medicine and Nutritional Supplements
2. Homeopathy
3. Acupuncture and Chinese Medicine
If time permits, a demonstration of acupuncture will follow.
- presented by Youngran Chung, MD, a Pediatric
Pulmonologist and Director
of the Lutheran General Cystic Fibrosis Center and a Certified Medical Acupuncturist,
and Charles Dumont, MD, Assistant Professor of Pediatrics,
Pediatric
Gastroenterologist and a member of the Cystic Fibrosis team at Loyola University
Medical Center, and Susan
Cotter-Schaufele MT-BC, a Clinical Training Director at Lutheran General
Hospital.
1:15 - 2:15pm Exercise : Just do it! - presented
by Steve Boas, MD, Associate Medical Director, CF Center, Children's Memorial
Hospital
1:15 - 2:15pm Newly Diagnosed and Toddlers with
CF Maureen Garvey, RN, BSN, CF Nurse Coordinator, Loyola University Hospital,
Ronald McDonald Children's
Hospital
1:15 - 2:15pm Nutritional Concerns in CF - presented by Cathy Powers, RD,
LD, Program Manager/Nutritionist, Rush Presbyterian, St. Luke's Medical Center
, and Christopher
Downey, a CF patient.
2:15 - 2:30pm Break
2:30 - 3:30pm Alternative Medicine and Cystic Fibrosis:
Potential Benefits-Potential Risks
1. Massage Therapy and Mind Body Medicine
2. Music therapy
(See Session I for details on presenters.)
2:30 - 3:30pm Home vs. Hospital Care: Financial
Aspects of CF - presented by Jeannine Cheatham, MS, RN, Pediatric
Pulmonary/CF Nurse Specialist, Rush Presbyterian St. Luke's
Medical, and M.J. Borg, RN, CF Center Nurse, University of Chicago Hospital
2:30 - 3:30pm Airway Clearance Techniques -
presented by Cathy O'Malley, RRT, Children's Memorial Hospital
2:30 - 3:30pm Adherence to Treatment in Adolescents: What's a Parent to do?
- presented by Stacy VandenBranden, RN, Research Nurse, Lutheran
General Hospital
3:30 - 4:00pm Evaluation
8:15 - 8:45am Registration/Continental Breakfast
8:45 - 9:00am Welcome Address by Maureen Garvey,
RN, BSN Cystic Fibrosis Nurse Coordinator Loyola University Hospital, Ronald
McDonald Children's Hospital
Medical Advisor
to the Chicagoland Adult Cystic Fibrosis Association
9:00 - 10:00am CF Research Update: Update on Lung Transplantation - presented
by Edward Garrity, MD, Director, Cystic Fibrosis Center and Lung Transplant
Program,
Loyola University Hospital Medical Center
10:00 - 10:15am Break
10:15 - 11:00am Embracing the Journey: Living with Chronic Illness presented
by Robyn Petras, Adult with CF, Resource Associate for Advanced Respiratory
11:00 - 12:00am CF and the Law - Know Your
Rights (Insurance Issues, Social Security, etc.) - presented by Carolyn
Utech, LCSW, CF Social Worker, Rush
Presbyterian,
St. Luke's Medical Center, and by: Gerri Lhotak, Financial Counselor, Loyola
University Medical Center
12:00 - 1:00pm Lunch
1:15 - 2:15pm Alternative
Medicine/Benefits of Acupuncture - presented by Youngran Chung, MD, Director
Pediatric CF Center Ronald McDonald Children's
Hospital of Loyola
University Hospital and a Certified Medical Acupuncturist , and Charles Dumont,
MD, Director Pediatric Complimentary Alternative Ronald McDonald Children's
Hospital of Loyala University
Hospital
1:15 - 2:15pm Exercise and CF - presented by
Steve Boas, MD, Associate Medical Director, CF Center Children's Memorial
Hospital
1:15 - 2:15pm Newly Diagnosed and Toddlers with CF Maureen Garvey, RN, BSN,
CF Nurse Coordinator, Loyola University Hospital, Ronald McDonald Children's
Hospital,
and Schiela Petrosino, RN, BSN, Pulmonary Nurse, Children's Memorial Hospital
1:15 - 2:15pm Adult Reproductive Issues/Options
- presented by Joanne Cullina, MS, RN, CF Nurse Coordinator,
Adult Northwestern Medical Center will lead this session
2:15 - 2:30pm Break
2:30 - 3:30pm Transition
to Adult Clinic - presented by Carolyn Utech, LCSW, CF Center Social Worker,
Rush Presbyterian, St. Luke's
Medical
Canter
2:30 - 3:30pm Nutrition Concerns in CF - presented
by Cathy Powers, RD, LD, Program Manager/Nutritionist, Rush Presbyterian,
St. Luke's
Medical Center, and Eileen Potter, RD, LD,
Program Manager/Nutritionist, Children's Memorial Hospital
2:30 - 3:30pm Teen Issues/Adherence to Treatment
- presented by Stacy Vandenbranden, RN, Clinical Research Nurse, Lutheran
General Hospital and Carolyn Heyman, RN,
Pulmonary
Nurse, Children's Memorial Hospital
2:30 - 3:30pm Infection Control - presented
by Jeannine Cheatham, MS, RN, CF/Pediatric Pulmonary Nurse Specialist, Rush
Presbyterian,
St. Luke's
Medical Center
3:30 - 4:00pm Evaluation
8:15 - 8:45am Registration/Continental Breakfast
8:45 - 9:00am Welcome Address
9:00 - 10:30am CF Research Update: Participating
in Clinical Research - presented by Arvey Stone, M.D., Adult CF Program
Director, Lutheran General Hospital,
and by: Stacy Vandenbranden, MS, RN, Research Coordinator/PNP, Luthern General
Hospital
10:30 - 10:45am Break
10:45 - 11:00am Boomer Esiason Foundation/Raffle
11:00 - 12:00am Living Well With Chronic Illness:
Patient/Family Panel - discussion with Jeannine Cheatham, MS, RN, CF/Pediatric
Pulmonary Nurse Specialist, Rush
Presbyterian, St. Luke's Medical Center, Moderator
12:00 - 1:00pm Lunch
1:15 - 2:15pm Newly Diagnosed
and Toddlers - CF Maureen Garvey, RN, BSN, CF Nurse Coordinator, Loyola
University Hospital will share
her many years of
experience at this session.
1:15 - 2:15pm "Letting Go" - Transition
to Adult Clinic. Joanne
Cullina, MS, RN, CF Nurse Coordinator, Adult Northwestern Medical Center
will lead
this discussion.
1:15 - 2:15pm Pre-School Issues/School Age Issues.
Steven Boas, MD, Pediatric Pulmonologist will be the moderator at this roundtable
discussion group.
2:15 - 2:30pm Break
2:30 - 3:30pm Nutrition Concerns
in CF: Preventing Long Term Complications - presented by Betsy Hjelmgren,
RD, LD, Nutritionist, Rush Presbyterian
St. Luke's Medical Center
2:30 - 3:30pm Infection Control - presented
by Jeannine Cheatham, MS, RN, CF/Pediatric Pulmonary Nurse Specialist, Rush
Presbyterian,
St. Luke's
Medical Center
2:30 - 3:30pm COTA (College Opportunity Through
Assistance) A Boomer Esiason Foundation Sponsored Service - Kevin Gemas of
the Youth Guidance Service will
explain this
program.
3:30 - 4:00pm Evaluation
Handouts, forms,
slideshows, links:
2003
handouts
8:15 - 8:45am Registration/Continental Breakfast
8:45 - 9:00am Welcome Address
9:00 - 10:00am CF Research Update 2003 (Including updates from National CF
Meeting 10/2003) - presented by: Lucille Lester, MD, CF Center Director,
University of
Chicago Hospitals
10:00 - 10:30am Break/Visit Exhibits
10:30 - 11:45am Living Well with Chronic Illness:
Patient/Family Panel - presented by: Carolyn Utech, LCSW Rush Presbyterian
St. Luke's Medical Center
12:00 - 1:00pm Lunch
1:15 - 2:15 Sessions
1.
Infection Control/Airway Clearance
- presented by Jeannine Cheatham, MS, RN, CF/Pediatric Pulmonary Nurse
Specialist, University
of Chicago Hospitals,
and by: Cathy O'Malley, RRT, Children's Memorial Hospital
2. Complementary/Alternative Medicine - presented by Youngran Chung,
MD, Pediatric CF Program Director, Loyola University Medical Center, and
by: R. Charles Dumont, MD, Associate Director-Complementary and Alternative
Medicine,
Loyola University Medical Center
3. Adult CF Issues - presented by Maureen Garvey, RN, BSN, CF
Clinic Coordinator, Loyola University Medical Center
2:30 - 3:30 Sessions
1. The Big Picture: Food Choices and Mealtime Behaviors
for Optimal CF Nutrition - presented by Susie Hayes, RD and by: Eileen
Potter, MS, RD,
Children's Memorial Hospital
2. School Age/Teen Issues - presented by Stacy Vandenbranden,
MS, PNP, Children's Memorial Hospital
Stacy Vandenbranden
3. Participating in Clinical Trials - presented by Young-Jee
Kim, MD, CF Center/University of Chicago Hospitals, and by: Cynthia Dunafon,
University of Chicago, adult with Cystic Fibrosis
Handouts, forms, slideshows, links:
Research Update, by Dr. Susanna McColley
Financial Considerations Facing Individuals with CF, by Robin M. Carter
Program Handouts:
1. You and your CF meds presentation
2. CFRI 2005 notice
3. NCFAC 2005 notice
4. USACFA notice
5. CFF Nutrition Handout
6. Spouses & Significant.Others
discussion topics
2004 CF Awareness Day Word Magnets
8:15-8:45am Registration/Continental Breakfast
8:45-9:00am Welcome Address
9:00-10:00am CF Research Update 2004
Building a Shared Vision: Quality Improvement
(QI) - presented by
Susanna McColley, MD, CF Center Director, Children's Memorial Hospital
10:00-10:45am Break/Visit Exhibits/Workshop
10:45-11:30am Living Well with Chronic Illness:
Patient/Family Panel - moderated by Carolyn Utech, LCSW, Rush University
Medical Center
11:30am-12:30pm Insurance/Financial Concerns - presented by Robin Carter,
Vice President, Cystic Fibrosis Services, Inc.
12:30-1:30pm Lunch/Round Table Discussions...
NEW THIS YEAR!: Round Table Topics: Newly Diagnosed, Travel/ Going to College,
Exercise and CF, Spouses and Significant Others, Teen Issues. (There will
also be open tables for general discussion during lunch. Please indicate
on your
registration form if you have a preference.)
1:45-2:45pm Sessions
1. Cystic Fibrosis Related Diabetes (CFRD) - presented by
Rose Briars, MSN,CPNP, Diabetes Nurse Educator/Nurse Practitioner, LaRabida
Children's Hospital,
and Jeannine Cheatham, MS, RN, APN, University of Chicago Hospitals
2. You and Your CF Meds: What your retail pharmacist may not be telling you -
presented by Rich Carroll, PharmD, Clinical Pharmacist, Children's
Memorial Hospital, and Emily Griffith, RD, CF Nutritionist, Children's Memorial
Hospital
2:45-3:45pm Sessions
1. Lung Transplantation - 15 years of experience - presented by Edward Garrity,
MD, Loyola Medical Center, Lung Transplant, CF Center Director
2. Adult CF Issues - presented by
Maureen Garvey, RN, BSN, CF Program Coordinator, Loyola University Medical
Center, Laura Huspen, Human Resources & Development Consultant, and Cynthia
Dunafon, Chicago CF Awareness Day Committee
3:45-4:00 pm Evaluation and Suggestions for 2005
Handouts, forms, slideshows, links:
Call for Art [art submitted for the first annual CF art show]
Picture Request [pictures submitted for the 25th anniversary celebration]
25 Years! [a slideshow celebrating the 25th year of the Chosen Few/Chicagoland Adult Cystic Fibrosis Association/Chicago CF Awareness Day]
Link to Bell Curve article:
"The Bell Curve: What Happens when Patients Find Out how Good their Doctors Really Are?" by Atul Gawande, published in the New Yorker, December 6, 2004
Link to Atul Gawande interview:
If you are interested in further reading, check out this link to an interview with Atul Gawande also posted on the New Yorker site when "The Bell Curve" was published.
8:15-8:45am Registration/Continental Breakfast
8:45-9:00am Welcome Address, review of infection control
9:00-10:00am 25 Years of Raising Community Awareness/Tracking
the Progress of CF Research - presented by Lucille A. Lester,
MD, Universtiy of Chicago Hospitals
10:00-10:45am Visit the Exhibit Hall: sponsors,"Hands-on" Workshop
(Portacaths, ACT, G-tubes, etc.), and poetry/art exhibit!
10:45-11:45am Living Well with Chronic Illness:
25-Year Reflection - patient/family panel moderated by Carolyn Utech, LSW,
Rush Presbyterian St. Lukes
12:30-1:30pm Lunch/Round Table Discussions
1:15-2:15pm Sessions
1. Cystic Fibrosis Related Diabetes (CFRD) - presented by RoseMary Briars,
MS, RN, PNP, CDE, LaRabida Children's Hospital, and Jeannine Cheatham,
MS, RN,
APN, University of Chicago Hospitals
2. Alternative Medicine: Hypnosis, Relaxation, Meditation: How does this
help with ACT and CF in general?, presented by Dr. Chung and Dr. Dumont,
Loyola
Medical Center
3. Children with CF: Meeting the Challenges at Each Age/Developmental Milestone
- presented by Margie Weides, RN, Lutheran General Hospital, and Kathy Kosmala,
MS, RN, PNP, Rush Presbyterian St. Lukes Medical Center
2:30-3:30pm Sessions
1. Discussion about the implications for CF care in "The Bell Curve:
What Happens when Patients Find Out how Good their Doctors Really Are?" by
Atul Gawande (published in the New Yorker, December 6, 2004) - moderated
by Stacey Vandenbranden, MS, RN, PNP, Children's Memorial Hospital, and Cynthia
Dunafon
2. CF Nutrition: Old Information/New Tricks, presented by Eileen Potter,
MS, RD, Children's Memorial Hospital
Getting through the First Year after Diagnosis and meeting the challenges,
presented by Maureen Garvey, RN, Loyola Medical Center
3:45-4:00 pm Evaluation and Suggestions for 2006
[ROLL YOUR MOUSE OVER A DATE TO CALL UP THE PROGRAM]