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

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BREATHE IN HOPE - ALL GIFTS MADE THROUGH CAUSEVOX BY FEBRUARY 28 WILL BE MATCHED 100%! While progress has been made in research and treatment options, the sad reality is that those with CF continue to wage a daily battle with a still fatal disease. Support the search for a CF cure and donate to our Breathe in Hope campaign. All gifts (up to $5,000) will be matched 100% by the Jessica Fredrick Memorial CF Research Challenge Circle and designated for CFRI’s CF research awards. Help us to turn $5,000 into $10,000! To donate now click here.

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REGISTRATION NOW OPEN FOR CFRI’S CF FAMILY EDUCATION CONFERENCE. Our 31st National CF Family Education Conference will take place August 3 – 5, 2018 in Redwood City, CA, and we have an exciting group of nationally renowned speakers lined up to present. In addition to updates on new medical discoveries and therapies, you’ll have the opportunity to meet representatives from pharmaceutical and medical technology companies, as well as network with peers from the CF community. Early bird registration is $185 (including all presentations, meals, award banquets and receptions). Limited scholarships are available. To register click here. Sponsored to date by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and the Boomer Esiason Foundation.

RESEARCH UPDATE

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ION-SUGAR INTERACTION IN AIRWAY MUCUS HAS IMPLICATIONS FOR CF. Two recent studies showed that ion-glycan interaction can affect the structure and fluidity of mucus, which has important implications for drug delivery. Researchers said the findings could lead to new treatments for CF. For more information, click here.

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SANTHERA TO DEVELOP AND MARKET POLYPHOR EXPERIMENTAL CF THERAPY. Santhera Pharmaceuticals has bought the rights to POL6014, a medication being developed by Polyphor to treat cystic fibrosis (CF) and other pulmonary diseases. Supported by positive preclinical and clinical data, Santhera plans to launch a multiple-ascending dose trial in European CF patients during the second half of 2018. To read the full press release, click here.

CFRI EVENTS AND PROGRAMS

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JOIN US ON THURSDAY, MARCH 15 AT 6:15 PM FOR A PODCAST RECORDING EVENT. Our speakers are Paul Mohabir, Director of the Adult CF Center at Stanford, who will speak on hemoptysis and what you should know about it, and Elyse Elconin Goldberg, who will talk about “Staying Positive through Declining PFTs: My Pre-Transplant Experience.”. Refreshments, wine and snacks will be provided. CF Community Voices is sponsored by Vertex Pharmaceuticals, Chiesi USA, and Gilead Sciences.

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EMBRACE RETREAT FOR MOTHERS OF CHILDREN AND ADULTS WITH CF TO BE HELD MAY 4 – MAY 6, 2018. Held in Menlo Park, California, the retreat offers art, yoga, journaling, CF resources, music, support, and respite time with women who share the CF path. This event is expected to sell out. To register, click here. 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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CFRI NOW OFFERS EIGHT SESSIONS WITH LICENSED THERAPIST OF CHOICE. CFRI provides up to $120 per session for eight sessions of counseling to individuals with CF (children and adults), their parents, partners, spouses and siblings with the licensed provider of their choice. Participants must live in the United States. For information, click here, or email svaeth@cfri.org. Made possible by grants from Vertex Pharmaceuticals, Global Genes, Gilead Sciences, and Genentech, as well as through contributions from individual donors.

SUPPORT CFRI!

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CFRI IS LAUNCHING ITS NEW CHAMPIONS OF HOPE MONTHLY GIVING PROGRAM. Join the growing group of dedicated CFRI donors who currently contribute on a monthly basis, providing consistent and meaningful resources for CFRI. To quickly and easily automate monthly gifts to CFRI, click here. Your credit card will be charged the second Friday every month. To change your monthly gift amount, call Tony Adessa at 650.665.7586 or email tadessa@cfri.org.

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DONATE YOUR BIRTHDAY TO CFRI ON FACEBOOK! JOIN OUR BIRTHDAY PARTY FUNDRAISING CLUB! CFRI’s Birthday Party Fundraising is free and easy to set-up on Facebook to involve your friends in supporting CFRI. Simply go to facebook.com/cfri.org and scroll down to the “Fundraisers” section and click “Create.” To participate click here.

OTHER PROGRAMS FOR THE CF COMMUNITY

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PATIENT ADVOCACY GROUPS - INCLUDING CFRI – JOIN IN WASHINGTON DC FOR RARE DISEASE WEEK. The goal: to raise awareness about the 7,000 or so known rare diseases, 95 percent of which have few treatments and no cures. Click here to watch the Rare Disease Day video.

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PATIENT ASSISTANCE PROGRAMS PROVIDE NEEDED SUPPORT. Please see the Patient Assistance Programs on our website for information on many programs from our partners, including Genentech, Vertex, AbbVie, Novartis, Chiesi USA, and RespirTech. For more information, click here.

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