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CFRI’s Weekly Summary of News & Events for Our CF Community!

 

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URGENT CALL TO ACTION! CONGRESS IS SET TO VOTE ON THURSDAY, MARCH 23 TO REPEAL THE AFFORDABLE CARE ACT AND REPLACE IT WITH THE AMERICAN HEALTH CARE ACT, WHICH JEOPARDIZES PROTECTIONS FOR THOSE WITH CF AND OTHER PRE-EXISTING CONDITIONS. The proposed legislation contains provisions that will be detrimental to those with CF or any pre-existing condition, including high risk pools, 30% premium penalties for those whose coverage lapses, a phase-out of Medicaid expansion, and capped per capita federal grants to states. The American Medical Association and nearly 50 other national health-related groups oppose the AHC Act. It is critically important that they hear from you. Encourage your elected officials to oppose the American Health Care Act by emailing them today! Please click here to let your elected representatives know that the American Health Care Act is unacceptable!

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CFRI’S MOTHERS’ DAY TEA FUNDRAISER BRINGS AWARENESS AND HOPE! PLEASE PARTICIPATE AS A TEA SENDER!  This annual tradition involves hundreds of people nationwide, promotes awareness of CF among our friends and family, and raises nearly $150,000 to support CFRI’s vital services to the CF community. Please call us and we will provide everything you need, including invitations and teabags, so that your friends may enjoy a cup of Mothers' Day tea. Donors give in their loved one's honor – and memory – to further CFRI’s outstanding research, education and support programs. CF remains the most common fatal genetic disease in the U.S. Please join us as a Tea Sender by calling CFRI at 650.665.7576, email cfri@cfri.org, or sign up online at www.cfri.org.

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MAKE A GIFT BY MARCH 31st, AND IT WILL BE MATCHED DOLLAR FOR DOLLAR (100%!) BY A VERY GENEROUS MEMBER OF OUR CF COMMUNITY! CFRI launched an online giving campaign, with a goal of raising $5,000 by March 31, 100% of which would be matched by a member of our CF community. Thanks to our caring community, we reached our goal in three days! Now our generous friend says that she will match every dollar up to $15,000. Let’s keep this momentum going! Every gift will be matched 100% and designated fro CFRI’s CF research awards. Let’s find a cure! To donate, click here.


CFRI EVENTS AND PROGRAMS


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LESS THAN SEVEN WEEKS AWAY! SIX ROOMS REMAINING! Join CFRI at its third annual Embrace Retreat for mothers of children and adults diagnosed with cystic fibrosis, May 5th through May 7th. Held at Vallombrosa Center in Menlo Park, California, this incredible weekend includes art, yoga, journaling, CF resources, music, support, and respite time with women who share the CF path. $150 includes two nights in a single occupancy room, meals, workshops, and retreat events. $75 registration includes meals, workshops and retreat events, but no room. To register, click here. Please join us! The deadline to register and reserve a room is Friday, April 21. For more information, call 855.237.4669, or email cfri@cfri.org. Made possible through grants from Vertex Pharmaceuticals, AbbVie and Gilead Sciences.


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FUNDS AVAILABLE FOR FIVE SESSIONS OF COUNSELING! CFRI provides financial support for individual counseling services in your community – regardless of where you live in the U.S. and regardless of insurance! Individuals diagnosed with CF and family members (parents, siblings and spouses) are eligible. CFRI will cover individual co-pays or provide up to $120 per session for five sessions of counseling with the licensed therapist of your choice. CFRI is proud to offer this support through our Partners in Living Initiative's CF Quality of Life Program, a Living Legacy of Peter & Kathy Judge. Therapists must contact CFRI prior to service delivery to confirm participation in the program. For more information, contact Siri Vaeth Dunn at svdunn@cfri.org or 650.665.7565. Generously underwritten by Vertex Pharmaceuticals.

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SAVE THE DATE: CFRI’s 30th NATIONAL CF FAMILY EDUCATION CONFERENCE JULY 28 – JULY 30, 2017! It is our 30th conference anniversary, and this will be a very special year. As always, we have a stellar line up of presenters, including John Clancy, MD, Kristin Riekert, PhD, Luke Hoffman, MD, PhD, Karen Von Berg, DPT, John Mark, MD, Paul Quinton, PhD, Cathy Chacon, RN, Carol Power, RT, Ray Poole, MBA, and Isa Stenzel-Byrnes, LCSW. In addition, six CFRI-funded CF researchers will share their work. We will have fantastic receptions, an awards banquet, and even a celebratory dance party! Our nationally renowned conference will be held at Pullman San Francisco Bay (formerly Sofitel San Francisco Bay). To register, click here. Sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and the Boomer Esiason Foundation.


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CFRI CF SUMMER RETREAT – “OUTSIDE EXPECTATIONS” – WILL BE HELD SUNDAY, JULY 30th THROUGH SATURDAY, AUGUST 5th. Taking place at Vallombrosa Center in Menlo Park, California, the Retreat provides a safe and supportive environment for adults with CF and their friends and families, and well as CF caregivers. Presentations by CF experts, yoga, art, rap sessions, exercise, and other activities make this a fun and meaningful event. Registration available now! Each year, attendees travel from across the country to attend. Sign up for a day or for the week – whatever fits your schedule. Individuals with CF must adhere to CFRI’s Infection Control Policy. To register, click here. Sponsored by AbbVie and Gilead Sciences.

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WATCH OR LISTEN TO OUR PODCASTS! Our newly posted podcasts feature two phenomenal speakers who address the vital role of exercise and fitness upon CF health. Taylor Lewis, MA, presents “Strength Matters: CF & Personalized Fitness Programs,” and Elyse Elconin-Goldberg, an adult with CF who is several years post-transplant presents, “Eat, Breathe, Exercise: My Journey to Wellbeing.” Podcasts are available on our Podbean site and YouTube channel. Generously sponsored by Vertex Pharmaceuticals, Chiesi USA, Gilead Sciences, Proteostasis Therapeutics, and Genentech.


RESEARCH UPDATE


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RESEARCHERS IN IRELAND DISCOVERED THAT AS LUNG FUNCTION DECLINES IN THOSE WITH CF, THE DIVERSITY OF BACTERIAL SPECIES DECLINES. The CFTR mutation is partially responsible for the changes in the gut microbiome, and this is further impaired by the frequent use of antibiotics. The use of proton pump inhibitors did not seem to impact gut flora diversity. The researchers believe that the development of probiotics specifically created for those with CF could improve outcomes. For more information, click here.

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CANADIANS WITH CF FOUND TO LIVE AN AVERAGE OF TEN YEARS LONGER THAN AMERICANS WITH CF. Researchers compared data from the Cystic Fibrosis Foundation registry with the Canadian Cystic Fibrosis Registry between 1990 and 2013; the 10-year increase in life span was evident between 2009 and 2013. The authors speculate that a large part of the improved survival for Canadian CF patients is due to Canada’s early implementation of an aggressive nutrition campaign in the 1970s, ten years prior to that in the United States. Insurance status and access to care plays another role.  To read a press release from St. Michael’s Hospital, where the research was conducted, click here.


COMMUNITY PROGRAMS


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SCHOLARSHIP APPLICATION TIME IS HERE! There are many scholarship opportunities for college students with CF, and several have fast-approaching deadlines, including The Boomer Esiason Foundation, AbbVie, the Bonnell Foundation, Living Breath Foundation, the Elizabeth Nash Scholarship Program, the CF Scholarship Foundation, and more. For additional information about these opportunities, please click here.


SUPPORT CFRI!


 

HOST AN EASY FUNDRAISER AND HELP THOSE WITH CF TO REACH NEW HEIGHTS! Here is an excellent example: On April 28, a member of our community is hosting a GROOV3 workout session at a San Jose gym, with all proceeds going to CFRI. Live in the area? Sign up! Many small fundraisers can have a big impact: from yard sales to lemonade stands, golf tournaments to footraces, the ideas are endless, and CFRI will help you succeed. We will recognize you & your event on our website and social media sites. Designate your fundraiser for CF Research Awards and all proceeds will be matched 100%. For more information, contact Mary Convento at CFRI: 650.665.7559/mconvento@cfri.org. Ready to start? Click here!


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SHOP AMAZON SMILE AND SUPPORT CFRI! A percentage of every purchase you make on Smile.Amazon.com goes to CFRI! Amazon Smile IS Amazon – it simply gives 0.5 of your total purchase to CFRI in support of our programs. It really works – we receive steady contributions, and hope they will grow. To go to Amazon Smile, click here.



 
CLINICAL TRIALS AND STUDIES


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NATIONWIDE CLINICAL TRIALS DATABASE:  Participation in clinical trials is critical to advance our understanding of CF, and to develop new treatments and therapies. Those interested in participating have two vital resources to access clinical trial information: SmartPatients.com  and CenterWatch’s CF clinical trial database.


 

CFRI is proud to partner with SmartPatients, an online community where patients and caregivers learn from one another.  We encourage you to sign up! To find out more about SmartPatients, please visit their website (www.smartpatients.com/communities/cystic-fibrosis ), or click on the link at the bottom of the page.


MORE INFORMATION AND REGISTRATION LINKS


   

For a full list of CFRI events and programs, including the Discovery Series, Support Groups and More, please click here.

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REMINDER THAT CFRI HAS A NEW LOCAL PHONE NUMBER: 650.665.7576. Our toll free number remains the same: 1.855.237.4669 (1.855.CFRI NOW). Every member of CFRI’s staff has a new telephone number; please ask for your contact’s direct number. Thank you for updating your records, and we apologize for any inconvenience.

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