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

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NEW PODCAST EPISODE: DR. MATTHEW PORTEUS DISCUSSES HIS RESEARCH EXPLORING CF AND GENOME EDITING. Dr. Porteus is a pioneer in the field of genome editing, and his research has demonstrated that gene correction can be achieved in human cells at frequencies high enough to potentially cure patients. Dr. Porteus provides an extraordinarily clear and concise explanation of this exciting new field. To view, click here. CF Community Voices is sponsored by Vertex Pharmaceuticals, Chiesi USA, Genentech, Gilead Sciences, and Proteostasis Therapeutics.

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GIVING TUESDAY OPPORTUNITY THANKS TO THE BILL AND MELINDA GATES FOUNDATION! On November 28th, starting at 5:00 am PST, The Bill and Melinda Gates Foundation will partner with Facebook to match all gifts to $25,000 made to CFRI on Facebook. CFRI will get 100% of these donations - no Facebook nor credit card fees! On Tuesday, November 28 go to https://www.facebook.com/cfri.org/ With the hectic pace of the holiday season, Giving Tuesday provides the opportunity to support CFRI’s impactful programs for the CF community. Thank you for giving generously!

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THE COMMUNITY IS INVITED TO A PODCAST FILMING EVENT FEATURING KAREN HARDY, MD, WHO WILL DISCUSS THE LATEST ON CF PATHOGENS, AND GINA SERRATO, MOTHER OF A CHILD WITH CF.  Join us on Tuesday, November 21st, at 3:00 pm for an informative and insightful discussion at CFRI (1731 Embarcadero Road, Suite 210, Palo Alto). For more information, email cfri@cfri.org. Sponsored by Vertex Pharmaceuticals, Chiesi USA, Gilead Sciences, Genentech and Proteostasis Therapeutics, with additional support from Novartis.

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NEXT CF CAREGIVERS SUPPORT GROUPS ON NOVEMBER 21st! Parents of Children meet from 5:00 pm – 6:00 pm PST; Parents/Spouses/Partners of Adults meet from 6:00 pm – 7:00 pm PST. To attend in person go to the 1st Floor Conference Room, 730 Welch Rd, Palo Alto, CA. To participate by phone from anywhere in the nation call 1-650-736-4444 – Access code: #070111028. Facilitated by Meg Dvorak, LCSW, CF Social Worker at Stanford. Made possible through grants from Vertex Pharmaceuticals & Genentech, and part of CFRI’s CF Quality of Life Program, a Living Legacy of Peter and Kathy Judge.

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WHETHER YOU OR YOUR LOVED ONE HAS CF, CFRI’S COUNSELING SUPPORT IS AVAILABLE FOR YOU, REGARDLESS OF INSURANCE. CFRI can provide up to $120 per session for five sessions of counseling with the licensed therapist of your choice. For more information, contact Siri Vaeth at svdunn@cfri.org or 650.665.7565. Generously underwritten by Vertex Pharmaceuticals and Genentech.

 

RESEARCH UPDATE

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 NOVOCLEM THERAPEUTICS’ LEAD ANTIMICROBIAL DRUG CANDIDATE, BIOC51, FOR THE TREATMENT OF CHRONIC PULMONARY INFECTIONS DUE TO PSEUDOMONAS AERUGINOSA, RECEIVES DESIGNATION AS A “QUALIFIED INFECTIOUS DISEASE PRODUCT” BY THE U.S. FOOD AND DRUG ADMISTRATION. This will make BIOC51 eligible for incentives for the development of new antibiotics provided under the Generating Antibiotic Incentives Now Act (GAIN Act), including priority review and eligibility for fast-track status. For more information, click here.

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PROTEOSTASIS THERAPEUTICS, WHICH IS CURRENTLY ENROLLING PARTICIPANTS FOR CLINICAL TRIALS INVOLVING ITS INVESTIGATIONAL CFTR MODULATORS PTI-428, PTI-801 and PTI-808, HAS UNDERGONE A STRATEGIC REORGANIZATION SO AS TO FOCUS ON ITS CYSTIC FIBROSIS PROGRAMS. The company has also entered a collaboration with Astellas Pharma. To read the press release, click here.

CFRI EVENTS AND PROGRAMS

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WE NEED YOUR INPUT! PLEASE COMPLETE OUR QUICK SURVEY TO LET US KNOW THE IMPACT OF OUR CF COMMUNITY VOICES PODCAST SERIES, AND ANY TOPICS TO ADDRESS IN THE FUTURE. The survey will allow you to complete evaluations for those podcasts you have watched. Your participation is vital to the future of the podcast series. To complete the survey, click here.

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CF AWARENESS ONLY GROWS IF YOU SPREAD THE WORD! Please watch and share CFRI’s 2017 Many Voices ~ One Voice CF Advocacy and Awareness video. Featuring members of our CF community, this moving film shares facts about cystic fibrosis and seeks to inspire viewers to join CFRI’s advocacy campaign. Please share the link with your friends, family and colleagues! To watch, click here.

 

SUPPORT CFRI!

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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. Contact Tony Adessa at CFRI to discuss your idea at 650.665.7586 / tadessa@cfri.org. Ready to start? Click here!

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DONATE YOUR BIRTHDAY TO CFRI ON FACEBOOK! CFRI’s Birthday Party Fundraising is free, quick and easy to set-up on Facebook, and a great way to involve your friends in supporting CFRI. Simply go to facebook.com/cfri.org and scroll to the “Fundraisers” section. To start your own campaign, click on “Create” and follow the few simple prompts. To participate click here.

OTHER PROGRAMS FOR THE CF COMMUNITY

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TRANSITION CAN BE CHALLENGING AND OFTEN MARKS A TIME OF LUNG FUNCTION DECLINE: CF R.I.S.E. CAN HELP. CF R.I.S.E. offers a powerful CF transition toolset built by a team of CF experts including physicians, allied healthcare providers, patients, and parents (including Siri Vaeth, CFRI’s Programs and Outreach Manager, and her daughter Tess Dunn), so as to help teens and young adults in the process of transitioning from pediatric to adult care. For information, click here. This program is sponsored by Gilead Sciences.

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PATIENT ASSISTANCE PROGRAMS PROVIDE NEEDED SUPPORT! Our website provides information on many patient assistance programs from our partners, including Genentech, Vertex, AbbVie, Novartis, Chiesi USA, and Respirtech. For more information, click here.

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