Cystinosis Research Network Family Conference
July 18 – 20, 2013
Marriott Wardman Park Resort
Washington, D.C.
AGENDA
Draft Agenda • 6/17/13
Wednesday, July 17
Room
4:00 pm –
8:00 pm
Congressional
Room
CRN Board of Directors Meeting
Closed Session
Thursday, July 18
Room
12:00 pm –
5:00 pm
1:00 pm –
4:00 pm
Registration / Information Desk
Marriott
Foyer
Congressional
Room
5:00 pm –
7:00 pm
CRN Welcome Reception
CRN Scientific Review Board Meeting
Closed Session
Complimentary Appetizers, Cash Bar
Hosts: The CRN Board of Directors
Marriott
Foyer
Please join us for drinks and appetizers and an opportunity to meet the families and physicians
attending the conference. Special surprise guest!
7:30 pm –
9:00 pm
Family Introductions
Pam Woodward, CRN Vice President Family Support
Maryland A
Friday, July 19
Room
7:00 am –
8:15 am
Breakfast
Marriott
Salon 1
8:00
5:30
8:00
5:30
8:00
9:00
8:30
8:40
Registration/Information Desk
Child Care Open
Marriott
Foyer
Maryland B/C
Teen Lounge Open
Maryland A
Welcome and Opening Remarks
Marriott
Salon 1
8:40 am –
9:00 am
Cystinosis Research Network – Your Advocacy Group
Jeff Larimore, CRN President
Marriott
Salon 1
9:05 am –
All About Cystinosis
Marriott
am –
pm
am –
pm
am –
pm
am –
am
Complimentary
Jeff Larimore, CRN President
9:35 am
William A. Gahl, M.D., Ph.D., Clinical Director, National Human Genome Research Institute;
Director, National Institutes of Health Undiagnosed Diseases Program
Salon 1
9:40 am –
10:00 am
Kidney Disease in Cystinosis
Marriott
Salon 1
10:05 am 10:25 am
Pulmonary Issues in Cystinosis
Marriott
Salon 1
Frederick Kaskel, M.D., Ph.D., Professor of Pediatrics and Vice-Chairman for Affiliate & Network
Affairs, Albert Einstein College of Medicine; Director, Division of Pediatric Nephrology, The Children’s
Hospital at Montefiore
Richard H. Simon, M.D., Professor and Associate Chair for Faculty Affairs, Department of Internal
Medicine; Pulmonary and Critical Care Medicine Division, University of Michigan Medical School
Although high levels of cystine affect many organs of the body in people with cystinosis, lung tissue
appears to be spared from this problem. However, difficulty in breathing can still occur because
cystine builds up and weakens muscles that are used to move air into and out of the lungs. The
muscle problem is a late occurrence in cystinosis and is likely delayed or reduced by cysteamine
therapy. Pulmonary function tests, which are easy to perform, can detect if someone’s respiratory
muscles are weak. It is recommended that such testing be done periodically for anyone with
cystinosis who has weakness in other muscles of the body or who complains of inappropriate
shortness of breath with exercise. For those with breathing problems, it is important to look for
other conditions that can cause shortness of breath whether someone has cystinosis or not. X-rays
such as CT scans of the chest are often done to exclude other problems. Evaluations of heart
function are also used to look for other causes of shortness of breath. Strategies to lessen the
chance of developing breathing problems are to avoid cigarette smoking and keep up to date with
immunizations against germs that can cause lung infections, particularly viral influenza. If
respiratory muscle weakness becomes a major problem, patients with cystinosis can breathe with
the help of a ventilator that they connect to when needed by a mask or similar device. This system
can be used at night when sleeping to rest the muscles that are used for breathing.
10:25
10:40
10:40
11:00
am –
am
am –
am
Break
Cysteamine and Gastrointestinal Issues in Cystinosis
Ranjan Dohil, M.D., Professor of Clinical Pediatrics, University of California at San Diego (UCSD;)
Pediatric Gastroenterologist at UCSD / Rady’s Children’s Hospital, San Diego
Cysteamine bitartrate is an aminothiol agent approved for the treatment of the lysosomal storage
disorder cystinosis. Cysteamine forms a mixed disulfide (MDS) with cystine, which then leaves the
lysosome. Cysteamine may be associated with gastrointestinal symptoms such as nausea, vomiting,
diarrhea. These symptoms do not occur in all children and may improve with acid reducing
medications such as proton-pump inhibitors. The new delayed–release formulation of cysteamine
may also reduce these symptoms. Regular cysteamine therapy is likely to reduce the severity of
swallowing dysfunction associated with cystinosis.
A recent study of cystine accumulation in cystinotic subjects showed that cystine crystals in
histiocytes were easily detected within intestinal mucosal biopsies. Generally, subjects with fewer
cystine crystals had better glomerular filtration rate and although statistical significance was not
achieved there was a trend towards reduction in crystal load over time, despite the fact that cystine
crystals never completely disappeared. Corneal cystine crystals do dissolve with relatively high
concentrations of cysteamine applied topically throughout the day. Such a high concentration of
cysteamine is unlikely to be achievable with the available oral formulation of cysteamine and this
may explain why intestinal cystine crystals persist and why regular cysteamine therapy only delays
the onset of renal failure and the need for renal transplantation. A study in rats may provide more
information. Cysteamine is rapidly absorbed from the small intestine, undergoes about 40% hepatic
first-pass metabolism, crosses the blood brain barrier, and is almost undetectable in plasma, CSF and
body tissues 2-3h after ingestion. This suggests that patients who take Cystagon every 6hrs only
have adequate tissue levels of drug for about 8hs of the day.
Absorption of cysteamine may also be affected by taking drug with meals. Over two thirds of
individuals with cystinosis take cysteamine with food as this may reduce associated GI symptoms.
Guidelines for drug ingestion are unclear. Human controls were given cysteamine and serial blood
levels were measured. Absorption (AUC) analysis for plasma cysteamine concentrations/time showed
significantly better absorption during fasting-state than after a high fat/high calorie or a high protein
meal. Although cysteamine bitartrate has been commercially available since 1994 little is known
about its pharmacokinetics. Determining the bio-distribution and duration of exposure of body
organs and CSF to cysteamine may help in the development of more effective formulations.
Marriott
Foyer
Marriott
Salon 1
11:05 am –
11:25 am
Neurological Issues in Cystinosis
Doris A. Trauner, M.D., Pediatric Neurologist, Professor, Departments of Neurosciences and
Pediatrics, University of California at San Diego (UCSD) School of Medicine; Senior Medical Staff
Physician at Rady Children’s Hospital, San Diego
Marriott
Salon 1
Cystinosis affects many organs in the body, including the brain and the muscles. There are several
possible neurological complications of cystinosis. Children with cystinosis may have gross or fine
motor coordination problems and low muscle tone. They may also have visual spatial, visual motor
and/or visual memory difficulties. They may experience some academic challenges. These problems
are present early in life, but some may be reduced with early cysteamine treatment.
Adolescents with cystinosis may experience a reduced quality of life, partly as a result of the
neurological issues.
Seizures are a rare potential complication. As they get older some individuals with cystinosis develop
muscle weakness that can affect hand strength, speech and swallowing in particular. Awareness of
the neurological complications of cystinosis can help with planning appropriate interventions for
children and adults with cystinosis who may exhibit some of these problems.
11:30 am 11:50 am
Pediatric Endocrine Issues in Cystinosis
Marriott
Salon 1
11:55 am 12:00 pm
12:00 pm 1:00 pm
Administrative Announcements
Marriott
Salon 1
Marriott
Salon 1
1:00 pm –
2:00 pm
Poster Session
This session will showcase a mix of science, medicine, industry, advocacy group and patient
experiences to provide an interactive experience for both family and professional attendees.
Researchers, clinicians, industry, advocacy representatives, students, patients, and caregivers will be
invited to exhibit their latest research findings, treatment breakthroughs, advocacy group updates
and real patient and family experiences. This will be an interactive session where exhibitors will be
available to discuss their work or experiences with those attending. We invite you to browse the
posters and take this opportunity to ask the authors and presenters questions.
Marriott
Foyer
2:15 pm –
2:45 pm
Therapeutic Implications of Recombinant Growth Hormone for the Myopathy of
Cystinosis
Marriott
Salon 1
Craig Langman, M.D., Professor of Kidney Diseases, Feinberg School of Medicine, Northwestern
University; Head, Kidney Diseases, Lurie Children's Hospital of Chicago
Jeff Larimore, CRN President
Luncheon
Complimentary
Galina Nesterova, M.D., Cystinosis Research Network Cystinosis Fellow Medical Genetics Branch,
National Human Genome Research Institute, National Institutes of Health, Bethesda, MD
Cystinosis has become a chronic multisystemic disorder highlighted by significant non-renal
involvement, including a progressive distal vacuolar myopathy with muscle wasting, oromotor
dysfunction, decreased pulmonary function and swallowing impairment. The mechanisms leading to
muscle wasting are complex and incompletely understood. NIH investigators have studied cystinosis
myopathy and have acquired substantial experience in this disorder. The rationale for the use of
recombinant human growth hormone (rhGH) in cystinosis patients with myopathy is based on its
potential beneficial effects on muscle mass and strength. Growth hormone (GH) exerts anabolic
effects on muscle by increasing amino acid transport into muscle cells and by incorporating these
amino acids into proteins, resulting in an increase in skeletal muscle.
We propose that GH can counter the muscle wasting of cystinosis patients. We are planning a crossover clinical trial, already approved by the NHGRI Institutional Review Board, involving patients with
cystinosis myopathy who could benefit from rhGH therapy. The drug will be provided by Ely Lilly
Pharmaceuticals and prepared by the NIH Clinical Center Pharmacy. Our original intent is to screen
34 patients within 24 months of initiating the study; this might require modification if enrollment is
slower than predicted to obtain total number of 20 patients. We wish to determine whether use of
rhGH is safe and effective in delaying or slowing the progression of the myopathy in symptomatic
cystinosis patients.
2:50 pm –
Hematopoietic Stem Cell Transplantation and Gene Therapy For Cystinosis
Marriott
3:10 pm
Stephanie Cherqui, Ph.D., Assistant Professor, Department of Pediatrics, Division of Genetics,
University of California, San Diego, La Jolla, California
Salon 1
Using the mouse model for cystinosis, Ctns-/- mice, we showed previously that transplantation of
bone marrow stem cell, more specifically hematopoietic stem cells, expressing a functional Ctns gene
could improve cystinosis. Cystine content was reduced in all tissues tested in the treated mice. Large
quantity of transplanted “healthy” cells was observed in all the organs. The natural progression of
renal dysfunction was prevented when enough “healthy” stem cell expressing a functional Ctns gene
were present in the bone marrow. This is a proof of concept for developing bone marrow cell
transplantation for cystinosis.
The first stem cell clinical trial for cystinosis has been approved at the University of California, Los
Angeles. This trial consists in using hematopoietic stem cells from a patient’s healthy sibling who will
be compatible (HLA-match sibling). However, this allogeneic stem cell transplantation presents some
risk of immune rejection and graft versus host disease, as the stem cells are not from the patient.
This trial is necessary to prove the efficacy of bone marrow cell transplantation for cystinosis in
humans and it could beneficiate some patients that cannot wait much longer a new treatment.
The long-term objective is to develop an autologous hematopoietic stem cell transplantation for
cystinosis. This procedure is the use of the patients’ own stem cells that will be genetically modified
and then reintroduced in the patients. This procedure presents less risk than allogeneic
transplantation. We performed the pre-clinical studies for genetically modified stem cells using a
lentiviral vector to introduce a functional CTNS gene in the mouse model for cystinosis. We showed
that transplanted modified cells were capable of decreasing cystine content in all tissues and
improving kidney function. The cells also integrated efficiently in all tissue compartments and
allowed long-term expression of a functional CTNS gene. We are now working with the Food and
Drug Administration (FDA) to perform the studies to prove the safety of our strategy and to be able
to move forward to a clinical trial.
3:15 pm –
4:15 pm
Medical Panel
Moderator: William A. Gahl, M.D., Ph.D.
Panelists: Bruce Barshop, M.D., Rachel Bishop, M.D, M.P.H., Leticia Belmont, M.D., Fabio Candotti,
M.D., Stephanie Cherqui, Ph.D., Maya Doyle, LCSW-R, Ph.D, Ranjan Dohil, M.D., Ewa Elenberg,
M.D., Francesco Emma, M.D., Paul Goodyer, M.D., Laurence Greenbaum, M.D., Ph.D., Julie
Ingelfinger, M.D., Frederick Kaskel, M.D., Ph.D., Robert Kleta, M.D., Ph.D., Craig B Langman M.D.,
Elena Levtchenko, M.D., Ph.D., Roslyn B. Mannon, M.D., Galina Nesterova, M.D., Richard H. Simon,
M.D., Jess G. Thoene, M.D., Doris A. Trauner, M.D.
Marriott
Salon 1
Please join the entire group for the unique and informative opportunity to have your questions and
concerns addressed by the leading physicians and researchers in cystinosis. All of the doctors who
have presented at the Family Conference, all attending Medical Advisory Board and Scientific Review
Board members, as well as other health care professionals involved in treating and researching
cystinosis are scheduled to participate. Questions for the panel will be collected during the
proceedings today.
4:15 pm –
5:00 pm
Gene Therapy / Stem Cell Discussion
Marriott
Salon 1
5:05 pm –
5:15 pm
Reed Family Presentation
Marriott
Salon 1
5:20 pm –
5:30 pm
Session Wrap Up
Marriott
Salon 1
Moderator: William A. Gahl, M.D., Ph.D
Panelists: Fabio Candotti, M.D., Head, Disorders of Immunity Section Genetics and Molecular Biology
Branch, National Human Genome Research Institute, National Institutes of Health, Stephanie
Cherqui, Ph.D., Assistant Professor, Department of Pediatrics, Division of Genetics, University of
California, San Diego, La Jolla, California, Rick Kaskel, M.D. Ph.D., Professor of Pediatrics and ViceChairman for Affiliate & Network Affairs, Albert Einstein College of Medicine; Director, Division of
Pediatric Nephrology, The Children’s Hospital at Montefiore
Jess Thoene, M.D., Director, Biochemical Genetics Laboratory, Active Professor Emeritus of
Pediatrics, University of Michigan
Deb Reed and Family
Jeff Larimore, CRN President
Saturday, July 20
Room
7:00 am –
8:00 am
Breakfast
Marriott
Salon 1
8:00
5:30
8:00
5:30
8:00
5:30
Registration/Information Desk
Marriott
Foyer
Maryland B/C
am –
pm
am –
pm
am –
pm
Complimentary
Child Care Open
Teen Lounge Open
Teens are welcome to spend time in the teen lounge anytime. Snacks and drinks will be available,
as well as video games and television.
Maryland A
8:30 am –
8:45 am
Opening Comments
Marriott
Salon 1
8:50 am –
9:10 am
Cystaran Update
Marriott
Salon 1
9:15 am –
9:35 am
Procysbi Update
Marriott
Salon 1
9:40 am –
10:00 am
Strategies of Successful Families
Marriott
Salon 1
Jeff Larimore, CRN President and Terri Schleuder, CRN Secretary
Lesli King, Senior Manager, Patient Affairs, Sigma Tau Pharmaceuticals
Craig Langman, M.D., Professor of Kidney Diseases, Feinberg School of Medicine, Northwestern
University; Head, Kidney Diseases, Lurie Children's Hospital of Chicago and Patrick Reichenberger,
Vice President, Commercial Operations, Raptor Pharmaceuticals
Maya Doyle, LCSW-R, Ph.D., Senior Social Worker/Camp Coordinator Division of Pediatric Nephrology
Children's Hospital at Montefiore; Adjunct Lecturer
Silver School of Social Work, New York University
Purpose: Medical advances have allowed for the transmutation of a rare metabolic disease,
cystinosis, from fatal in childhood to chronic and manageable well into adulthood, creating new
challenges for patients, families, and providers. Presentation will discuss findings from the Cystinosis
in Emerging Adulthood study, with a focus on family strategies for living with illness.
Methods: Focus groups and/or semi-structured interviews were conducted with 49 individuals from
21 families: 10 women and 12 men (ages 18-47) with cystinosis, and family members. Interviews
and groups were audiotaped and transcribed. Study utilized a classic Grounded Theory (GT)
approach (Glaser, 2011; Glaser & Strauss, 1967), which provides a structured approach to the
analysis of rich qualitative data: coding, memoing, and constant comparison guided data collection
and analysis. This method allowed researcher to develop an iterative understanding of the
experience of adults living with cystinosis, in the context of changing medicine.
Results: Participants described strategies which include Educating, Regimenting, Pushing and
Protecting and Connecting, which assist cystinosis patients and their families to negotiate childhood
and adolescence, to enter into adulthood with self-care skills, and to find a fit between normative
developmental tasks and management of illness.
Implications: As understanding of, and treatment options for, rare and genetic childhood diseases
expand, healthcare providers and multidisciplinary teams must be aware of the changing experience
and perception of illness, particularly as individuals survive to adulthood and face new, and perhaps
unexpected, developmental tasks. The strategies described by participants may help frame the
expectations of families and organize how resources and support are offered.
10:00 am–
10:15 am
10:15am –
10:55 am
Break
Living with Cystinosis Panel
Moderator: Maya Doyle, LCSW-R, Ph.D, ., Senior Social Worker/Camp Coordinator Division of
Pediatric Nephrology Children's Hospital at Montefiore; Adjunct Lecturer
Silver School of Social Work,
New York University
Panel members: Andrew Hoffman, Shannon Keizer, Jennifer Loglisci, Mack Maxwell, Amanda
Morey, Briana Smythe, Matt Stinson, and Bryan Stout
Marriott
Foyer
Marriott
Salon 1
Panel presentation during which individuals living with cystinosis will answer prepared questions and
address topics related to the use of coping mechanisms through the ups and downs that cystinosis
brings related to not only developmental and transitional issues of daily life but also medical issues.
Teens and adults living with cystinosis will be featured and will share how they have recognized and
lived to their full potential given the challenges they have faced. Audience participation will be
encouraged.
11:00 am -
Effectively Dealing with Stress for Those Who Care for Others: Mind Body Self-Care for
Marriott
11:30 am
Cystinosis Caregivers
Gregory Lewis Fricchione, M.D., Director of the Benson-Henry Institute for Mind Body Medicine at
Massachusetts General Hospital (MGH), Associate Chief of Psychiatry, MGH, and Director of the
Division of Psychiatry and Medicine, MGH
Salon 1
Caregivers provide much needed support, nurturing and treatment to ill family and friends.
Caregivers provide an important support system and often attend to many needs of loved ones while
they are not in their doctor’s care.
Caring for a loved one with cystinosis can take an emotional and physical toll, and as such,
caregivers often experience stress, anxiety and occasionally even burnout as a result of their efforts.
Nevertheless, they are often focused on their duties to provide for their loved ones, thereby
neglecting their own stress, anxiety and/or physical ailments. This lecture is designed to show
caregivers the importance of addressing their own stressors and to introduce them to mind body
approaches and self-care strategies that they can employ in order to reduce stress and enhance
resiliency. Not only will these approaches allow caregivers to relieve or prevent burnout, stress and
anxiety, they will also likely help them take better care of their loved ones, resulting in improved
quality of life for both parties.
This program will focus on a review of published literature, highlighting up-to-date research on
caregiver stress as well as mind body medicine. In addition, specific mind body strategies to manage
stress and anxiety that can be applied in daily life will be discussed.
11:35 am–
11:55 am
Development Overview
11:55 am–
12:00 pm
Administrative Announcements
12:00 pm–
1:00 pm
Luncheon
1:00 pm –
2:45 pm
Workshop Session A
These topic specific workshops allow families to tailor their conference experience to meet their
specific needs. Families will have the opportunity to discuss and share their own experiences
regarding the latest research, management techniques, and therapies with leading experts as well as
with other families with similar issues and concerns. Sessions will be repeated so that participants
may attend more than one workshop.
1:00 pm –
2:45 pm
A1 - Newly Diagnosed Families
Marriott
Salon 1
1:00 pm –
2:45 pm
A2 – Childhood Issues
Park Tower
8219
1:00 pm –
2:45 pm
A3 – Neurological and Educational Issues
Park Tower
8212
1:00 pm –
2:45 pm
A4– Transplantation
Park Tower
8216
1:00 pm –
2:45 pm
A5– Adult Issues
Balcony A
1:00 pm –
A6 - Mind Body Wellness for the Caregiver
Park Tower
Jose Morales, CRN VP Development
Marriott
Salon
Jeff Larimore, CRN President
Complimentary
Hosts: Rachel DaLomba, CRN Board Member and Pam Woodward, CRN VP Family Support
Panelists: Ewa Elenberg, M.D., Robert Kleta M.D., Ph.D., Galina Nesterova, M.D.
Hosts: Jen Sexstone, CRN Treasurer and Deb Reed, CRN Board Member
Panelists: Ranjan Dohil, M.D., Larry Greenbaum, M.D., Ph.D., Jess Thoene, M.D.
Hosts: Christy Greeley, CRN Executive Director and Brittney LeBeau, CRN Board Member
Panelist: Doris Trauner, M.D.
Hosts: Marybeth Krummenacker and Richard Jordan, CRN Board Members
Panelists: Paul Goodyer, M.D., Roz Mannon, M.D.
This session is open to all. Session B5 is a private session for adults with cystinosis only.
Host: Jessica Jondle, CRN VP Education and Awareness
Panelists: William A. Gahl, M.D., Ph.D., Richard Simon, M.D., and Maya Doyle, LCSW-R, Ph.D.
Marriott
Salon 1
Break Out
Rooms
2:45 pm
Host: Colleen Hammond
Panelist: Rana Chudnofsky, MEd, Director, Education Initiative, Massachusetts General Hospital,
Benson Henry Institute Massachusetts General Hospital, Benson-Henry Institute
8222
Caregivers often selflessly focus on loved ones at the expense of their own health. Burnout, anxiety,
physical ailments, and other stress-related conditions can result, such that the caregiver actually
becomes less effective. This seminar will teach caregivers the importance of addressing their own
stressors and introduce them to low-cost, easily-accessible mind body approaches and self-care
strategies that they can use to reduce stress and enhance resiliency for themselves and their loved
ones’ benefit. The program will provide a knowledge foundation and a basic self-care toolkit
including: Introductions to single point, mindful and movement based meditation; and positive
psychology concepts.
2:45
3:00
3:00
4:30
pm –
pm
pm –
pm
Break
Workshop Session B
These topic specific workshops will allow families to tailor their conference experience to meet their
specific needs. Families will have the opportunity to discuss and share their own experiences
regarding the latest research, management techniques, and therapies with leading experts as well as
with other families with similar issues and concerns. Sessions will be repeated so that participants
may attend more than one workshop.
Marriott
Salon 1
Break Out
Rooms
3:00 pm –
4:30 pm
B1 - Newly Diagnosed Families
Marriott
Salon 1
3:00 pm –
4:30 pm
B2 – Childhood Issues
Park Tower
8219
3:00 pm –
4:30 pm
B3 – Neurological and Educational Issues
Park Tower
8212
3:00 pm –
4:30 pm
B4– Transplantation
Park Tower
8216
3:00 pm –
4:30 pm
B5– Adult Issues
Balcony A
3:00 pm –
4:30 pm
B6 - Mind Body Wellness for the Caregiver
Park Tower
8222
Hosts: Lynn Thomas, CRN Board Member and Pam Woodward, CRN VP Family Support
Panelists: Ewa Elenberg, M.D., Robert Kleta, M.D., Ph.D., Galina Nesterova, M.D.
Host: Jen Wyman, CRN Board Member
Panelists: Larry Greenbaum, M.D., Ph.D., Jess Thoene, M.D.
Hosts: Jeff Larimore, CRN President and Kathy Mandrell, CRN Board Member
Panelist: Doris Trauner, M.D.
Host: José Morales, CRN VP Development
Panelists: Paul Goodyer, M.D., Roz Mannon, M.D.
This session will be a private session for adults with cystinosis only.
Session A4 is open to all.
Host: Tahnie Woodward
Panelists: Maya Doyle, LCSW-R, Ph.D., William A. Gahl, M.D., Ph.D., Richard Simon, M.D.
Host: Terri Schleuder, CRN Secretary
Panelist: Rana Chudnofsky, MEd, Director, Education Initiative, Massachusetts General Hospital,
Benson Henry Institute Massachusetts General Hospital, Benson-Henry Institute
Caregivers often selflessly focus on loved ones at the expense of their own health. Burnout, anxiety,
physical ailments, and other stress-related conditions can result, such that the caregiver actually
becomes less effective. This seminar will teach caregivers the importance of addressing their own
stressors and introduce them to low-cost, easily-accessible mind body approaches and self-care
strategies that they can use to reduce stress and enhance resiliency for themselves and their loved
ones’ benefit. The program will provide a knowledge foundation and a basic self-care toolkit
including: Introductions to single point, mindful and movement based meditation; and positive
psychology concepts.
4:45 pm –
5:30 pm
Conference Wrap Up and Announcement of the Above and Beyond Achievement Award
Marriott
Salon 1
6:30 pm –
10:00 pm
Farewell Dinner Dance
Marriott
Salon 1
Jeff Larimore, CRN President
Complimentary, Cash Bar
Please join all conference attendees for dinner, dancing, and fun for all ages to celebrate our
cystinosis community