Mission Statement
Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis, a life-threatening genetic disease.
33 Years of CF Research, Education and Support
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Federal ID 51-0169988
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CFRI 21st Annual Education Conference
Living a Medical Miracle:
CF Today and Tomorrow
CFRI's 21st Annual Education Conference took place between August 1 and August 3 of this year.
We are pleased to provide the community with the following information from the conference.
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DVD's from our Education Conference are now available.
Please click here for an order form.
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2008 CFRI Awards and Honorees
CFRI proudly presents these annual awards in recognition of outstanding contributions to the CF community.
We thank these remarkable people for their time and their commitment to those affected by cystic fibrosis.
2008 CFRI Professional of the Year Award
Marybeth Howard, Ph.D.
As chair of CFRI’s Research Advisory Committee, Marybeth has provided stellar leadership in management and oversight of our New Horizons Research and Elizabeth Nash Memorial Fellowship programs. Her expertise and cooperation is reflected in her excellent advice and guidance.
2008 Dave Stuckert Memorial Volunteer of the Year Award
Andrea Eisenman
As Executive Editor and Webmaster for USACFA, Andrea is an active advocate and spokesperson for the
New York Donate Life organ procurement organization. In addition she speaks to CF families at educational events and shares her story openly. She is an active member in the United States Transplant Games
and has become a role model for a healthy lifestyle.
Conference Sponsors and Supporters
CFRI's Annual Education Conference would not possible without the generous support of our sponsors and supporters!
We extend our heartfelt thanks for making the invaluable event possible for our CF community:
Sustaining Partners
Genentech, Inc.
Boomer Esiason Foundation
Novartis, Inc.
Gilead Sciences, Inc.
Platinum
Axcan Pharma US, Inc.
Dymedso, Inc.
Gold
Solvay Pharmaceuticals
Swank Audio Visuals
Silver
A-Med Speciality Pharmacy
CF Services Pharmacy
Cystic Fibrosis and Freedom Pharmacy
Digestive Care, Inc.
Eurand Pharmaceuticals, Inc.
Electromed, Inc.
Maggie Lefebrve
Med Systems
PARI Respiratory Equipment, Inc.
Respirtech, Inc.
Supporters
Ambry Genetics
CysticFibrosis.com
Los Altos Sunset Rotary Club
Nelson Biotechnologies, Inc.
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Conference Presentations
PowerPoint presentations from CFRI's 21st Education Conference are now available as PDF files:
Cystic Fibrosis Research: New Horizons (PDF)
by Marybeth Howard, Ph.D., University of California San Francisco
The Elizabeth Nash Memorial Fellowship (PDF)
by Jonathan Widdicombe, Ph.D., University of California Davis
"The Permanent Me" (PDF)
by Tiffany Christensen, Author and Patient Advocate with CF, Chapel Hill, NC
Improving Lung Function By Controlling Infection (PDF)
by Richard H. Simon, M.D., University of Michigan, Ann Arbor, MI
Cystic Fibrosis-Related Diabetes (PDF)
by Dana Hardin, M.D., Director of Endocrinology and Metabolism Division,
Nationwide Children's Hospital and
Ohio State University College of Medicine, Columbus, OH
Sexuality and Reproduction in Cystic Fibrosis (PDF)
by Anna O. Tsang, R.N., N.P., M.S.N.,
St. Michael's Hospital, Toronto, Canada
Say What? Explaining Medical Care to Children with CF (PDF)
by Courtney Moreland, B.S., C.C.L.S., and
Debra Monzack, B.S. Ed., C.C.L.S.
Lucile Packard Children's Hospital, Palo Alto, CA
Exciting Progress in Cystic Fibrosis Research (PDF)
Carlos Milla, M.D., Associate Professor - Pediatrics,
Stanford University Medical Center, Stanford, CA
Strategies to Reduce Time for Airway Clearance (PDF)
Mark R. Elkins, Ph.D., Research Physiotherapist,
Respiratory Investigation Unit,
Royal Prince Alfred Hospital, Sydney Australia
Complementary and Alternative Medicine (PDF)
John D. Mark, M.D., Clinical Associate Professor - Pediatrics,
Lucile Packard Children's Hospital, Stanford, CA
Compliance and Cystic Fibrosis: It's all in the Family (PDF)
Joseph Solowiejczyk, R.N., M.S.W., C.D.E.,
Clinical Manager of Counseling and Presentations,
Animas Corporation
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Counseling and Psychotherapy Services for the CF Community
The Doors Are Open to ALL in the Bay Area*
The Transpersonal Counseling Center in Palo Alto, California is offering
counseling and psychotherapy services to those who are part of the cystic fibrosis community.
- This program is designed specifically for those impacted by cystic fibrosis, including patients, families, caregivers, and clinical staff. It can help address stress, grief, anger, communication issues, time management and other psychological, social and spiritual aspects of dealing with cystic fibrosis. Psychotherapists work with adults, adolescents, children, families and couples.The fee is set on a sliding scale based on income. No one will be turned away for lack of financial resources.
- *A protocol for safety regarding cross-infection has been fully developed and implemented. This is similar to the protocol used at the CFRI Conference and Day Retreat. While those with Burkholderia cepacia, MSRA and pan-resistance to antibiotics will not be seen at the Center, telephone counseling IS available.
Services will be provided at the Transpersonal Counseling Center
1069 East Meadow Circle, Palo Alto, CA.
For more information, visit their website: http://www.itp.edu/resources/counselservices.cfm
To make an appointment for a private consultation, please call the
Transpersonal Counseling Center directly at: (650) 493-5006 ext. 224.
This unique program is made possible by the
Cystic Fibrosis Quality of Life Program: A Living Legacy of Peter Judge, (PDF)
a collaborative effort of Cystic Fibrosis Research, Inc, the Institute of Transpersonal Psychology,
and The Center for Education in Family and Community Medicine at Stanford University.
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CFRI Wine Club
CFRI is pleased to work with Chateau Marie Antoinette Winery of Morgan Hill to bring our community
award-winning quality premium varietals from Monterey County that are affordable. Call Darrell at (650) 404-9978 for information.
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Just Arrived Our Summer Newsletter!
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CFRI Summer 2008 Newsletter is Here!
Stay in touch with the
latest in CF research developments and other topics of interest.
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For our CF community in California, please note the website of the
Genetically Handicapped Persons Program (GHPP) has been updated!
Visit their website to find further information of their services and benefits.
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Cystic Fibrosis in the Classroom Publications
CFRI is pleased to announce that
Cystic Fibrosis in the Classroom
is available to our CF community
in English and Spanish versions.
We hope this will be an important resource for
all who have children that are attending school,
teachers, nurses and school administrators.
For hard copies, contact us at
(650) 404-9975 or cfri@cfri.org.
CF in the Classroom (English) - PDF
CF in the Classroom (Spanish) - PDF |
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Educational DVD's and CD's
 Individual presentations are available in
both DVD and CD-ROM formats for the following presentations:
"Who Should Consider Special Needs Trusts?"
Guest Speaker: Michael Gilfix, Esq.
CFRI General Membership Meeting
May 28, 2008
Click here for order form.
Stanford CF Education Day
Lucile Packard Children's Hospital
March 15, 2008
Click here for order form.
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A Book for the Journey:
The Power of Two:
A Twin Triumph Over Cystic Fibrosis
By
Isabel Stenzel Byrnes and Anabel Stenzel
For book signing dates and more information visit http://www.stenzeltwins.com/ |
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At Cystic Fibrosis Research, Inc., your research dollars are spent wisely.
CFRI has just recently received the coveted
4-Star Rating from Charity Navigator.
Visit Charity Navigator to see
how CFRI compares with other charities.
We are also listed in Guidestar, another premium charity evaluator:
We thank all our donors and volunteers for your generous support!
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