Spring 2015 - Cystic Fibrosis Research Inc.

40 Years of Research,
Education & Support
Spring 2015
New Year Rings In New Hope
for Cystic Fibrosis By Bridget Barnes
With a new year underway, the treatment of
bipartisan group
of legislators,
in its history. When combined into a single
pill, new and promising drugs Kalydeco
target the root cause of CF for 50% of the
population, and are currently poised for the
therapy for people with two copies of the
Delta F508 mutation will be approved in
2015, as well as other medications that may
slow the progression of the disease for
some. In fact, the CF drug pipeline is over-
for all the clinical trials. While there is still no
cure, with the development of these potential lifelines, CF is moving into a new age.
In January, legislation was introduced to
rare diseases participate in clinical trials
or health coverage. The Ensuring Access to
Clinical Trials Act of 2015, sponsored by a
year permanent.
This law has
enabled those
with rare diseases,
such as CF, to
receive payment
for participation
in clinical trials
their income when
calculating for
Supplemental
Security Income The future looks bright for many with CF, thanks to new therapies.
and Medicaid.
we are today, so close to controlling this
Without this law, the negative financial
impact contributed to lower enrollment in disease, without the generous and couragecritical trials. According to Julie Desch, MD, ous clinical trial participation of thousands
a researcher at the Cystic Fibrosis Research of people with CF.” The need for clinical
Laboratory at Stanford University who also trial enrollees is more important than ever.
Continued on page 4
Ion Transport Properties in Human
Native Small Airways:
Implications for Cystic Fibrosis
By AKM Shamsuddin, PhD | CFRI New Horizons Research Program Principle Investigator
Defective transepithelial ion transport has long been recognized to be a major contritherapy must be provided is not well understood. Small airways are the primary target in
responsible for the obstruction of the small airways with inspissated and dense secretions
CFRI-funded researcher, AKM Shamsuddin, PhD,
at work in his lab.
airways because of their relative inaccessibility.
Continued on page 8
CFRI Community
Letter from the
Spring 2015
Editorial Chief
Sue Landgraf
Editors & Writers
Bridget Barnes
Siri Vaeth Dunn, MSW
Contributing Writers
Mary Convento
Bill Hult
Sue Landgraf
AKM Shamsuddin, PhD
“Coming together is a beginning;
keeping together is progress;
working together is success.”
Dear Friends,
— Henry Ford
This year CFRI celebrates its 40th
anniversary. Our beginning – spearheaded
by parents whose children with CF faced a
grim prognosis – led to 40 years of progress.
Sue Landgraf and David Soohoo
Layout and Design
Marina Michaelian Ward
Board of Directors
Bill Hult, President
Jessica Martens, Vice President
Mike Roanhaus, Secretary
Oscar Flamenco, CPA, Treasurer
Brad Baugh, Esq
Francine Bion
Elyse Elconin-Goldberg
Doug Modlin
Kristin Shelton, RRT
2015 is also a year of transition for our organization. In February, David Soohoo, CFRI’s intrepid
Director of Programs & Operations for the past 14 years, retired to spend time with his family.
With his calm presence, David was a vital anchor for the organization. During his tenure, David
Executive Director
We are poised to meet our many goals for 2015. I am thrilled that we met our 2014 Research
Challenge Fund goal, thereby increasing the number of funded research projects by four, to a
total of 11
Memorial CF Research Challenge Fund. We are honored to pursue a cure in memory of Jessica
and all those who have lost their battle with this terrible disease, and in honor of all those with
CF who wage their daily battle for life.
Sue Landgraf
Programs & Outreach
Manager
Siri Vaeth Dunn, MSW
Programs & Outreach
Supervisor
including the annual National CF Family Education Conference, CF Discovery Series, and many more.
Mary Convento
Programs & Operations
Associate
Programs & Operations
Assistant
Warmly,
France Redmayne
CFRI Community is published
and distributed to friends of
CFRI for free.
Sue Landgraf | Executive Director and mother of an adult daughter with CF
News from the Board
Send address corrections and
other correspondence to CFRI:
1731 Embarcadero Road,
Suite 210
Palo Alto, CA 94303
Dear CFRI Community,
CFRI continues to embody its tagline, Research for Living ~
Partners for Life, by both broadening its research programs and
Phone: Toll Free 1.855.cfri.now
(1.855.237.4669)
Fax: 650.404.9981
Email: [email protected]
Website: www.cfri.org
With our permission, you may
reproduce original information
from this newsletter with credits
to CFRI Community and the author.
2
of our diverse CF community. In 2014, the Board of Directors
conducted a survey with active members of our community.
in pursuing our mission, as well what resources they believe
CFRI should provide in order to be as useful as possible to the CF
Bill Hult, President
Continued on page 3
cfri | Spring 2015
Be a Part of the Push for a Cure
By Siri Vaeth Dunn, MSW
largest single donation to CFRI in
the organization’s history, to inspire
others to give generously to fund CF
research and support. Please join her!
How wonderful it is that nobody
need wait a single moment
before starting to improve the world.
—
Those with CF spend hours each day
trying to slow its inevitable progression. In addition to lung disease,
many cope with liver issues, diabetes,
The need for increased research funding
is critical. As we stand on the cusp of new
complications. We still have much
investigations, to move us closer to a cure.
CFRI is very pleased to have broadened
the lives of our loved ones. But we
cannot do it without you. Please give
today and help us match the Circle’s
fund so that we can bring hope to
those with CF and their loved ones.
leadership of members of our CF Research
Challenge Circle, and the generosity of those
who contributed to the Research Challenge
Fund. CFRI needs your help to continue this
forward momentum. Please join with us to
improve the lives of those battling cystic
Together, we can improve the world.
Together, we can inspire hope and
your gift to CFRI will be matched 1-to-1 by
Jessica Fredrick
CF Research Challenge Circle, thereby
doubling the impact of your donation! As
with most challenge matches, should we
not reach our goal by year’s end, we must
last year at the age of 21 from complications
all gifts received through this newsletter
will be matched by the Circle and will be
used to fund vital CF research projects.
uating from UCLA. Jessica was a member
of a student dance club, and an active
advocate and fundraiser for CF research.
Her health declined rapidly last spring,
and tragically, she lost her battle while
awaiting a lung transplant.
Jessica reminds us of the urgency facing
our CF community, and how, in the face
CF treatment options, but there is still no
cure. In fact, our CF Research Challenge Fund continue the quest to improve the world
for those living with CF. After Jessica’s
inspiring young woman who passed away death, her aunt, Suzanne Freiley, made the
News from the Board
Continued from page 2
community. Nearly 500 people responded,
and their input was both encouraging and
and CF in the Classroom. In light of cross
infection concerns for those with CF, respondents also recognized CFRI for successfully
live streaming important information via
our Discovery Series.
Respondents emphasized the need for
To contribute to the Jessica Fredrick
Memorial CF Research Challenge Circle,
please call 650.404.9975, or email [email protected]
CF Research Challenge Circle
Suzanne Freiley
Shannon Jorgensen
John and Sallie Best
Millward Brown, Inc.
Michael and Pat Flynn
Sue and Marc Landgraf
Elizabeth Nash Foundation
Doug and Robin Modlin
Fred and Linda Milanovich
Sereno Group of Willow Glen
Spiritus Project
inaugural pediatric conference, bilingual
resource materials, and our online Mindfulness Based Stress Reduction class. In
currently funding 11 CF research projects –
up from seven the previous year. We are
grateful to our entire CF community for its
When queried about the usefulness of
resources that CFRI currently provides, the
of people with CF.” This was gratifying for
Peace and good health,
updates on CF treatment and research,”
as well as our educational and support
publications, including CFRI Community,
through our monthly Caregivers Support
Group, one-to-one counseling program,
Bill Hult | Board President
cfri | Spring 2015
3
New Year Rings In New Hope
Continued from front cover
Visit www.clinicaltrials.gov and www.
smartpatients.com to learn more about
which CF clinical trials are currently enrolling
study participants, some of which include
family and friends.
people with CF ages 12 and older with two
copies of the Delta F508 mutation, was
recently granted an accelerated target
summer. Results from late-stage clinical
lung function and other health measures.
Pharmaceuticals plans to enroll people
over age 12 with advanced lung disease in
2015 will likely bring new therapies for CF.
from the treatment prior to its potential
conjunction with Cystic Fibrosis Foundation
and Patient Support website at www.
In February, for people ages 12 and older
with either one or two copies of the Delta
F508 mutation, constituting 90% of the CF
Phase 3 trials of Kalydeco in combination
move the faulty CF protein to the proper
place in the airway cell membrane.
For those who have the R117H mutation,
results from a Phase 3 trial. In people with
this mutation, Kalydeco helps restore the
chloride ions to and from the airways.
Another new treatment that targets
the underlying cause of cystic fibrosis is
entering a multiyear research program
to evaluate a novel approach to improve
Cystic Fibrosis Transmembrane Regulator
May is Cystic Fibrosis
Awareness Month!
We honor all those living with CF,
and remember those we have lost.
Be a part of the search for a cure.
4
levels of an important signaling molecule in
the body, which is lower in people with CF.
an aerosolized therapy to deliver normal
directly to the lungs, where it can be used
by the body’s cellular mechanisms to
If successful, this therapy could benefit
all people with CF regardless of an
individual’s mutations.
A Phase 2 proof of concept study sponsored
by Novartis is currently underway for
would be administered in pill form for
people with either one or two copies of
the Delta F508 mutation. QBW251 is being
tested in both healthy subjects and those
that have CF.
Enrollment is complete in a multi-center
Phase 1b trial by N30 Pharmaceuticals, Inc.
for people with two copies of the Delta
F508 mutation. N6022 is a new injectable
of the defective CFTR protein and decreases
a new class of compounds that increases
Alpha 1 Anti-trypsin, an aerosolized protease
inhibitor, which has anti-inflammatory
properties. A Phase 2 single-center trial was
also completed at National Jewish Health
a phosphodiesterase inhibitor, can reduce
Savara Pharmaceuticals is currently analyzing positive data from a Phase 2 trial
studying AeroVanc, an inhaled antibiotic
powder for persistent methicillin-resistant
Staphylococcus aureus
infections, which impact an estimated 25%
With so many medications poised to cross
seemingly within reach, 2015 is positioned
disease for many, and may greatly enhance
the quality of life for more and more people
living with CF.
The AbbVie CF Chef Shares
is now available! Visit www.chef4cf.com
to view the new recipes submitted by members of
our CFRI community.
cfri | Spring 2015
CFRI’s Research Program: Another Year of Success!
By Siri Vaeth Dunn, MSW
Since 1975, CFRI has provided grant funding
channel assay using SPQ
research at well-established medical institutions. Our investment in novel ideas has
enabled researchers to bring new perspec-
the way for the assay that
was used to discover CFTRtargeting drugs such as
With the support of the 2014 CF Research
Challenge Circle members, $150,000 in
additional funding was raised to support
discovered that CF carriers
have sweat chloride levels
halfway between those of
CF patients and non-carriers,
projects are in addition to the eight funded
through our New Horizons Campaign,
Elizabeth Nash Memorial Fellowship and
Special Circumstances grant programs.
The research program is overseen by CFRI’s
Board of Directors, as well as the Research
group comprised of researchers, clinical
physicians,
adults with
CF, and
parents of
those with
CF. All
research
proposals
undergo a
rigorous
peer review
process
prior to
selection.
warded to the Board of Directors for their
recommendations. Final funding approval is
then sought from CFRI’s voting Membership.
Bubble Assay,” a promising
Beate Illek, PhD
Paul Quinton, PhD
method for screening potential therapeutics for all CF mutations. Horst
With some of the best and brightest minds
strated restoration of G551D CFTR mutation
function using genistein, which led to the
development of Kalydeco and other similar
research projects, 2015 promises to be
CF treatments continues.
Projects Funded Through the 2014 CF Research Challenge Fund
Paul Beringer, PharmD | University of Southern California
Mechanism of macrocyclic peptide regulation of Pseudomonas-induced
University of California San Francisco
Tmem 16a as a target for treatment of chronic lung infection in CF patients
Proposals for the third research project are now being vetted.
Special Circumstance Grant
Sara Modlin | Touro University California
Prevention of Cystic Fibrosis Distal Intestinal Obstructive Syndrome
Projects Funded Through the Elizabeth Nash Memorial Fellowship
Forest Rohwer, PhD, Robert Quinn, PhD, et al | San Diego State University
Stanford University
Over the years, CFRI-funded researchers
University of CA San Francisco
Development and Characterization of Novel 3D Airway Cell Models for CF Research
Wito Richter, PhD, Elise Blanchard, PhD | University of California San Francisco
and treatments. These include the ground-
Inhibition of Type 4 phosphodiesterases as a therapeutic approach for CF
that a defective chloride channel is the basic
disease-causing defect, and his discovery
The Role of CFTR in a Novel Pathogen Sensing Mechanism
Joanne Engel, MD, PhD, Travis Ruch, PhD | University of California San Francisco
Projects Funded Through the New Horizons Research Campaign
AKM Shamsuddin, PhD | University of California San Diego
a transporter of bicarbonate. Jonathan
Widdicombe, PhD, discovered that the
defective chloride channel discovered by
Quinton is present in human airway epithelial
cfri | Spring 2015
Ion Transport Properties in Human Native Small Airways
Ning Yang, MD, PhD | University of California San Diego
Correcting Abnormal Cystic Fibrosis Mucus with CFTR-independent HCO3- Secretion
Stanford University
A Little CFTR Goes a Long Way: Accurate, in vivo Readout of CFTR Function
5
September 1, 2014 — December 31, 2014
Our In Memory of ”
and
In Honor of ”
pages
provide the
opportunity
to honor a
person, family,
or special event,
or
to remember
a loved one.
If you want your
donation to honor
or
remember
someone special,
please include
the person’s
name and address
with your
donation.
At your request,
we will send an
of your gift to the
person you
designate.
Please mail your
contributions to:
CFRI
1731
Embarcadero Rd.
Suite 210
Palo Alto, CA
94303
6
Elaine Abrams
Carol A. Adelman
Kimberley Adelman
Marcus Adelman
Gianna R. Altano
Rosemary Altano
Edward Andreini
David Armknecht
Jodi Armknecht
Ann M. Baldwin
John Baumgartner
Cara Baysinger
Anne C. Beltrame
Kristina Benson
Patricia Berndt
Lara Borowski
Wendy Bosarge
Lyman Bourke
Greg Brazil
Dick Brewster
Cheri Brower
Mary Bruno
Mary-Jane Burroni
Kyle Butler
Peter Byram
Agnes and Jess Calleri
Sonya Chartrand
Cynthia Clark
Cassandra Cochran
Sonny Crockett
Caroline Daly
James Delehanty
Paul Dotur
Tom Doyle
Yolanda “Lindy” Stagnaro Dunn
Jennifer Eisner
James Ekegren
Steven Elconin
Jennifer English
Cecil Ervin
Dave Fernandes
Selma Fink
Dan Fitzgerald
Mary L. Fleming
Jessica A. Fredrick
Patricia Fredrick
W. Erby George
Diana Goodman
Keith Gordon
Cynthia L. Haley
William and Alice Hargis
Joseph and Frances Hartman
Anthony Hidalgo
Mark Holmes
Tracy Holmes
John Holmes
James L. Houston
Robert Houston
Edward J. Jensen
Brian Jensen
Paul Jones
Kathy and Peter Judge
Jason Jurman
Iva Kaminski
Kathleen Kions
Lori Kipp
Viola Kiviniemi
Bridget Klein
David Kroepfl
Jane Ellen Kulik
Eugene Lagomarsino
H. Lane
Matthew Lewis
Dawn Longero
Jennifer Longoria
Robert Mackey
Eleanor Maroni
Catharine Martinet
Nahara Mau
David McAfee
Jamie Smolin McDonald
Barbara A. McKee
Taynna Melendez
Jennifer Montgomery
John R. Moran
Don Muldoon
Carolyn M. Musto
Kimberly Myers
Elizabeth Nash
Kim Nelson
Kim & S. Nelson
Danny and Kevin O’Brien
Michele D. Olson
Jennifer Ortman
Dellene Ott
Pearl Family
Barbra A. Petitt
Kevin Pira
Maxine Plotkin
Jon Prater
Tim Prater
Jim and Bonnie Predny
Jaimee B. Renfrow
Brittany Richmond
Katie Robinson
Pamela K. Rockhold
John Runge
Maureen Sazio
Dhea Schalles
Linda Scherschel
Joseph M. Sinnaeve
Tammy Smerber
Anabel M. Stenzel
Robert C. Stewart
Charlie Stockley
James S. Strohn
David Stuckert
Laurie Stuckert
Thibault Family
Helen L. Trader
Louis A. Trigueiro
Roy Tripp
Mary Tripp
Phyllis Tripp
Ralph Turner
Jennifer Uskoski
Aurore and Jerome Vaeth
Howard Van Dyk
Martha B. Wakefield
Tom Walton
Nicky Wastell
Delores Wegner
Maurice Wernli
Hayley C. Wester
Andy Williams
Sandra K. Wilson
Cynthia Witman
cfri | Spring 2015
September 1, 2014 — December 31, 2014
Connor Acheson
Marie Amaya
Robert Amaya
Sadie Anderson
Jessica Arvidson
Kyle Baker
Katie A. Barcikowski
Lucy Barnes
Bridget Barnes
Jamie Barry
Joseph Batchelder
Baugh Family
Makinnon Baugh
Marin Baugh
Maggie-Faye Bendz
Brett Bennett
Sharon Le Berthon
Theresa Le Berthon
Allison Best
Julie M. Buck
Linda Burks
Brian Burks
Jane Burroni
Isabel Stenzel Byrnes
Jaclyn Cacciatore
Andrew Carl
Traci Carwana
Sammy Cassidy
John C. Ceres
John R. Christie
Eva Clayton
Shaun Collins
Lauren Colonna
Nicholas A. Cook
Cameron Cornell
Barbara H. Curry
Edna DeVore
Jason Dolan
Ann duFrane
Tess Dunn
Josh Ellis
Janelle and Andre Estournes
Thomas Evans
Theresa Fenimore
Orison Fischer
Jarrod Fischer
cfri | Spring 2015
Victoria Flamenco
Flynn Family
Joseph Fraker
Jacob Fraker
Emily Fredrick
Rhonda Fredrick
Suzanne Freiley
Isabella Frisbee
Frisbee Family
Sean Gallagher
Morgan Garcia
Mark E. Gerow
Gaynell Gleason
Elyse Elconin Goldberg
Tara Goodearly
Emily Gorsky
Barbara S. Greenberg
Gianna Gutierrez-Serrato
Jean Hanley
Kathy Hardy
Brendan Harrigan
Nancy Harrison
Barbara Harwood
Tara Heppe
Susan Hoffman
Courtney Hollis
Nicholas Hollis
Clark Huddleston
Isabel Huntzinger
Michelle Jones
Peggy B. Jones
Alex Karwowski
Brian Kennedy
Jeremy Kharrazi
Shae Kish-Walters
Eleanor Kolchin
Jason Konkel
Steven Kusalo
Sue Landgraf
Allyssa Lenart
Maeve Leonard
Marilyn Lewis-Hampton
Michael Livingston
Joseph A. Lopez
Janet Lowery
Alyson Lowery
Emily F. Lucas
John and Matthew Magner
David Martin
Elizabeth A. Mayer
Mikayla McDonald
Rachael McMullen
Rebecca McMullen
Beth McMullen
Jackie Merrill
Carlos Milla, MD
Jonathan Miller
Fiona R. Mischel
Hannah Mitchell
Anna Modlin
Amanda Moretto
Angela Morey
Mary Mori
Jessica Nett
Natalie Newman
Lindsey J. Nijmeh
Maggie O’Connell
Joshua O’Connor
Aly, Maddie and
Killian O’Reilly
Michael E. Orlen
Joni Pan
Payton Walker
Olivia Pearson
Carole Perry
Brie Peters
Jereme Pierce
Alex Prator
Dory Ptak
Michael Reuscher
Brian Reynolds
Rebecca Roanhaus
Carl Robinson
Elizabeth Rogers
Alanah Rosenbloom
Matthew S. Ruckersfeldt
Rich Ryan
Scott Sandler
Ben Sanford
Corey Sarkis
Kasey Schumacher
Gina Serrato
Jessie Shah
Janice Shaul
Rachel Silver
Tara Sinclair
Kandra L. Smith
Lisa T. Steiding
Laura Steuer
Robert Sutter
Brian Tacke
Erin Phillips Taylor
Meilssa P. Teeman
Frank Thibault
Adam Thompson
Katherine Thompson
Lisa Tingley
Todd Trisch
Robert Turk-Bly
Heidi Umber
Sara Umber
Chris Vallee
Betty Vitousek
Devin Wakefield
7
Implications for Cystic Fibrosis
Continued from front cover
With the support of a New Horizons
research grant from CFRI, our team in Dr.
Paul Quinton’s lab at the University of
and crucial for effective bactericidal
activities of antibiotics, as well as innate
antimicrobials and defense mechanisms of
the airways of the lung.
pathogen clearance and may be a target
iments according to our original proposal to
and utilized a special mini-Ussing chamber
human lung tissue from lobectomy patients
through the UCSD Pathology Department,
which we believe will greatly increase the
supply of tissue for our research.
ment of the ion transport properties of
human native small airways specimens
of dissecting bronchioles of the lung and
measured open circuit transepithelial
potential, conductance and equivalent
short circuit current in controlled and
pharmacological stimulated conditions.
volume in the small airways primarily
calcium-activated chloride channel agonists
secretion in human native small airway
CFRI-funded research is expanding our understanding of ion transport properties in small airways.
absorptive functions. In this study we tested
our hypothesis that human native small
airways consist of separate populations of
secretory and absorptive cells that recycle
The results suggest that human native
small airway epithelia are capable of
appropriate airway hydration and hygiene.
We also tested that human native small
airway epithelia secrete bicarbonate
in human native small airways is probably
critical to normal innate defense mechanism of the airways. Failure to secrete
as to whether anion conductance can
compensate for the loss of CFTR function in
as well as innate antimicrobials and defense
mechanism of the airways.
Become a CFRI Partner in Living!
DONATE TO THE 2015 CF RESEARCH CHALLENGE FUND
Challenge Circle to raise funds to support additional CF research
donors, designated gifts to CFRI will be matched 100% and
restricted to our CF research programs.
MOTHERS’ DAY TEA Our Mothers’ Day Tea continues to be
Tea Sender. For those who wish to use the Internet to reach
out to friends, colleagues and family members, you may also
TRIBUTES IN HONOR OF & IN MEMORY OF Any gift
to CFRI can be made in honor or in memory of a loved one.
Your loved one’s name will appear in our newsletter, and if
you designate.
GIVING GIFTS OF STOCK TO CFRI Giving a gift of
easy and fun!
to donate to CFRI, contact us for instructions on how to
complete the transaction.
ATTEND A CFRI FUNDRAISING EVENT Whether you want
CHARITABLE PLANNED GIVING
auction items, we have an event for you! In addition to the
Magical Evening at Carolands, we have concerts, golf tournaments, and other events that will be posted on our website,
Have fun while supporting CFRI!
.
VEHICLE DONATIONS If you have a car, boat, recreational
vehicle, or motorcycle that you no longer need, please con-
HOLD YOUR OWN FUNDRAISER: 40 Years – 40 Events!
deductible, and we will coordinate the transfer of property.
bocce ball tournaments – come up with an idea and we will
support you!
For more information please contact
Mary Convento at 650.404.9975 or [email protected]
Big or small, we appreciate them all! Zumbathons, concerts,
8
cfri | Spring 2015
CFRI Launches Partners in Living Initiative:
A Holistic Approach to Life with Cystic Fibrosis
By Siri Vaeth Dunn, MSW
meditation and yoga to help those touched
CFRI is pleased to have launched its
Approach to Life with Cystic Fibrosis” to
community – including children and adults
with the disease, parents, caregivers and
family members – to achieve optimal
physical and mental well-being. Funded
and chronic pain. The class will be held every
Sunday from 4:00 pm – 6:00 pm PST, beginning on April 12. Registration is open to those
diagnosed with CF, as well as to caregivers.
Because this is an online class, there are no
geographic limitations. The $75 registration
sions. For more information or to register,
addresses the need for increased information
and support for those coping with the
challenges of life with CF.
In order to better address the needs of
will host a one-day Cystic Fibrosis Pediatric
Road: Tools to Help Your Child Thrive,” on
Saturday, May 16, from 9:00 am to 5:30 pm,
City. A CF parent mentor, as well as medical
caregivers and researchers from Stanford,
UC San Francisco, and UCSF Benioff
programs to provide direct service for those
Program: A Living Legacy to Peter Judge”
therapy is available to California residents,
provided by mental health professionals
who have special training in CF-related
funds. In addition, a CF Caregivers Support
Group is now held on the 4th Tuesday of
each month at 7:00 pm PST, facilitated by
a licensed professional at CFRI’s office.
Those who live outside the Palo Alto area
participate by telephone. To sign up for the
support group, please call 650.404.9975.
A third component of the Initiative is a
class for the CF community. Led by Julie
thereby improving health and quality of life.
CFRI is committed to being your partner in
living. Please join us!
CFRI’s 28th National Cystic Fibrosis
Family Education Conference
Partners in Progress
July 31 - August 2, 2015
Redwood City, CA
families and caregivers of children with CF.
For more information, or to register, please
The second component of the Partners in
support for
the many
challenges
that accompany life
with CF.
Attendance
at the pediatric conference, and participation in support groups, therapy sessions
Our annual
conference brings together
the latest updates in research and care to
our diverse CF community.
Speakers (To Date) Include:
Chris Kvam, Esq — Rochester, New York
Stanford Hospital and Clinics
Margaret Rosenfeld, MD — Seattle Children’s Hospital
Scott Russell, DPT — University of Southern California
Boston Children’s Hospital
Beth Sufian, Esq — Houston, Texas
Anna Tsang, MSO — St. Michael’s Hospital, Toronto
Early Bird Registration
$180 per person
$215 per person
Registration includes meals, reference materials, and access to presentations & support groups.
To ensure good health for all, please use proper hygiene practices.
See www.cfri.org
For more information, visit www.cfri.org or call 1.855.cfri.now
Sponsored By:
Genentech Chiesi USA Gilead Sciences AbbVie Novartis
Boomer Esiason Foundation Foundation Care Pharmacy
combine body awareness, mindfulness
cfri | Spring 2015
9
Save the Dates
CFRI’s Discovery Series
Integrative Medicine & Cystic Fibrosis
March 12, 2015 | 6:00 pm – 7:30 pm PST
Crowne Plaza Cabana Hotel, Palo Alto, CA
Livestreamed! Sponsored by Genentech
CFRI’s Bilingual DVD,
Now Available!
CFRI is proud to announce the creation of
trando la Cara de Fibrosis Quística,” a
bilingual DVD created to provide information
and hope to families facing a recent diagnosis
CF Caregivers Support Group
4th Tues. of Every Month
7:00 pm – 9:00 pm PST
Narrated by Dr. Carlos Milla, Director of the Cystic Fibrosis Center at Lucile
Or participate by phone – Please RSVP
Sponsored by Vertex
provided in English and Spanish. The DVD reassures families that there are
resources available and they are not alone, and also serves as a useful tool
to educate family and friends about CF.
CF Discovery Series
Organ Donation: Donate Life
CFRI is grateful to Novartis Pharmaceuticals and The Safeway Foundation
April 14, 2015 | 6:00 pm – 7:30 pm PST
Crowne Plaza Cabana Hotel, Palo Alto, CA
Livestreamed! Sponsored by Genentech
available at no cost to the CF community. To request copies, please email
Mindfulness-Based Stress Reduction
(MBSR)
First Class Sunday, April 12, 2015
Every Sunday until June 7, 2015
4:00 pm – 6:00 pm PST
Register Now! Sponsored by Vertex
Quística en la Clase”
Available Now!
CFRI Mother’s Retreat
CFRI is pleased to announce that one of its
most
the Classroom” as well as the Spanish version,
April 17 – 19, 2015
Register Now!
CFRI Pediatric Education Conference
Navigating the CF Road:
Tools to Help Your Child Thrive
May 16, 2015 | 9:00 am – 5:30 pm
Register Now! Sponsored by Vertex
CFRI 28th National CF
Family Education Conference
Partners in Progress
educating teachers, school nurses and others, to help them understand the
This new edition includes valuable information about the Individuals with
504 of the Rehabilitation Act, and preparing for a successful transition to
ceuticals for its generous support of these widely used resources for the CF
educate.shtml or call 650.404.9975.
July 31 – August 2, 2015
Register Now! See pg. 9 for sponsors.
The CFRI Retreat
Come to the CF Retreat!
August 2 - 9, 2014, 2015 |
Vallombrosa Center, Menlo Park, CA
August 2 – 9, 2015
Register Now!
For more information about any of these events,
please call 1.855.cfri.now (1.855.237.4699)
or email [email protected]
10
with CF. Adults with CF, their family members, friends, and healthcare promodations are available at Vallombrosa Center; scholarships are available. To
ensure good health for all, please use proper hygiene practices. All participants and guests with CF must comply with CFRI’s Cross Infection Control
Guidelines. See www.cfri.org for more information, or call 1.855.237.4699.
cfri | Spring 2015
Embrace: A Retreat for Mothers of Those with CF
April 17 through 19, 2015 | Vallombrosa Center, Menlo Park, CA
CFRI will host its first retreat created for
mothers of children and adults living with
tive strategies for coping, while
that mothers have in the care of their loved among mothers.
ones with CF.
Registration for those staying at VallomHeld at the beautiful Vallombrosa Center brosa is $100, which includes two nights
participants may in a single occupancy room, all meals,
home. The retreat’s focus is on self-care and is a very limited number of rooms: early
acceptance of one’s place on the CF journey. registration is highly recommended. RegisProviding support groups, art projects, yoga, tration for commuters is $50, which includes
journaling, CF resources, as well as respite
Please join us! For more information, call
650.404.9975, or go to www.cfri.org
Time for Tea: Time for a Cure!
further CFRI’s outstanding research and
education programs, so as to improve the
The annual Mothers’ Day Tea is CFRI’s biggest help to reach our goal of $175,000. Please
fundraiser of the year, and we need your
participate as a Tea Sender! It’s easy:
contact us at CFRI, and we will provide
you with everything you need, including
invitations, teabags and information
about CFRI. Mail the invitations to your
family and friends, encouraging them
to enjoy a cup of tea on Mother’s Day
while reflecting upon their loved ones
As the future for those living with CF continues to brighten, CFRI is proud to play such a
crucial supporting role in the lives of those
impacted by CF.
Please join us! To become a Tea Sender,
their honor – and in their memory – to
Navigating the CF Road:
Tools to Help Your Child Thrive
Sponsored by Vertex
Pharmaceuticals, Inc.
cfri | Spring 2015
$45 per person (includes lunch) | Register now! Visit www.cfri.org or call 650.404.9975
11
PAID
1731 Embarcadero Road . Suite 210
Palo Alto, California 94303
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CFRI’s mailing list is confidential. We do not sell our list, nor do we give out any names or addresses under any circumstance.
CFRI Mission
CFRI’s 40th Anniversary Gala
A Magical Evening at Carolands
Cystic Fibrosis Research, Inc.
exists to fund research,
to provide education and
personal support, and
to spread awareness of
Please join us as CFRI celebrates
40 years of innovative research
and support services for the CF
community! On Friday, September
a life-threatening
genetic disease.
evening. CFRI’s Magical Evening
at Carolands provides a rare
opportunity to enjoy gourmet
CFRI Vision
Carolands chateau, in Hillsborough,
California, will provide the mem-
setting, while raising critical funds
for CF research.
Recently featured in the nationally
CFRI envisions
informing, engaging
and empowering
the CF community to
help all who have this
challenging disease attain
the highest possible
quality of life.
Visit our website at:
www.cfri.org
for more information about us
and her Chateau: Carolands of
California,” the 98-room mansion
was built by Harriett Pullman
Carolan, heiress to the Pullman
Carolands — Photo by Gary Weimberg
In addition to delicious food and libations, the
evening will feature special entertainment and
to sell out. Sponsorship opportunities are
available. For more information, go to www.
cfri.org or call Siri Vaeth Dunn at 650.404.9445.
Do not miss this once-in-a-lifetime event!
Generously sponsored – to date – by AbbVie
and Chiesi USA, Inc.
For their generous support of CFRI Community, s
Gilead Sciences, Inc.
Genentech
Call toll free: 1.855.cfri.now
Cystic Fibrosis Research, Inc.