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

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ONLY TWO WEEKS AWAY! Join us at our third annual Embrace Retreat for mothers of children and adults with cystic fibrosis, May 5th through May 7th. Held at Vallombrosa Center in Menlo Park, California, this incredible weekend includes art, yoga, journaling, storytelling, CF resources, music, support, good food, a rousing drum circle, 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 this Friday, April 21: We have one more room remaining. For more information, call 855.237.4669, or email Made possible through grants from Vertex Pharmaceuticals, AbbVie and Gilead Sciences.



IN VITRO STUDIES OF NOVOCLEM THERAPEUTICS’ LEAD DRUG CANDIDATE, A NITRIC OXIDE RELEASING BIOPOLYMER, SHOW ITS CAPABILITY TO ERADICATE NINE PATHOGENS RESPONSIBLE FOR SEVERE LUNG INFECTIONS IN THOSE WITH CF. Eradicated pathogens included Methicillin-resistant Staphylococcus aureus (MRSA), Pseudomonas aeruginosa, Burkholderia cepacia, and Mycobacterium Avium-Intracellulare Complex (MAC). Said Dr. Mark Schoenfisch, of the University of North Carolina at Chapel Hill, who is co-inventor of the nitric oxide-releasing biopolymer platform technology and Novoclem's Chief Science Officer, “The findings suggest that Novoclem's product has great clinical utility across a range of difficult-to-treat infections. That's why we believe our technology will be able to break down the bacterial drug resistance barrier and soon we'll be able to effectively treat many types of lung infections. " Novoclem will likely submit an Investigational New Drug application and initiate clinical trials in early 2018. For more information, click here.


EXTENDED STUDY WITH CF PATIENTS USING SOLLPURA, A FORM OF PANCREATIC ENZYME REPLACEMENT THERAPY THAT IS NOT PORCINE DERIVED, FOUND THAT PATIENTS MAINTAINED WEIGHT AND HEIGHT, AND THE THERAPY WAS WELL TOLERATED. According to a press release from Anthera, maker of Sollpura, “Sollpura represents potentially the first soluble, stable and non-pig derived enzyme product to offer a solution to people with EPI, including young children and adults, who are either unable to swallow multiple pills or require gastric tubes in order to maintain appropriate nutritional health.” Anthera now plans to initiate a Phase 3 trial in 2017, with topline data anticipated by the close of 2017 or early 2018. For more information, click here.


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  1. OPEN ACT (HR 1223 - Orphan Product Extensions Now, Accelerating Cures & Treatments) legislation has been re-introduced to Congress. Passage of this legislation would dramatically increase the number of rare disease treatments available.
  2. Funding for the National Institutes of Health (NIH) and Food and Drug Administration (FDA) will be slashed under the Administration’s proposed budget. The NIH would lose $5.8 billion; the FDA would lose hundreds of millions.
  3. Prevent passage of the Preserving Employee Wellness Programs Act (H.R. 1313), which would exempt employee wellness programs from patient protections that are included in the Americans with Disabilities Act (ADA) and the Genetic Information Nondiscrimination Act, thereby removing critical patient privacy protections related to genetic makeup and medical history.

To easily email your representatives through CFRI’s Many Voices ~ One Voice CF Advocacy and Awareness campaign, click here.

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HAVEN’T WATCHED OUR CF ADVOCACY AND AWARENESS FILM RECENTLY? Take three minutes to watch, and then share it with your friends and family. Sometimes people forget what those with CF go through on a daily basis. This film is a powerful reminder. Click here to watch.


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OUR LIBRARY OF PODCASTS IS GROWING! Thus far we have explored constipation and other CF-related GI issues, CF and physical fitness, and CF and reproductive health. Our next podcast explores CF and mental health and will be released the week of April 25. Podcasts are available on our Podbean site and YouTube channel. Generously sponsored by Vertex Pharmaceuticals, Chiesi USA, Gilead Sciences, Proteostasis Therapeutics, and Genentech.

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CFRI’S COUNSELING SUPPORT IS HELPING PEOPLE NATIONWIDE! 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 their family members (parents, siblings and spouses) are eligible. CFRI covers co-pays or provides 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 or 650.665.7565. Generously underwritten by Vertex Pharmaceuticals and Genentech.

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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 P. Clancy, MD (update on the CF Pipeline); Kristin Riekert, PhD (CF and adherence); Luke Hoffman, MD, PhD (CF pathogens); Karen Von Berg, DPT (physical therapy in CF care); John Mark, MD (CF and adjunctive therapies); Paul Quinton, PhD (30 years of CF research progress); Cathy Chacon, RN (health issues and CF adults); Carol Power, RT (respiratory therapy options); Ray Poole, MBA (lessons from a CF cornerman); and Isa Stenzel-Byrnes, LCSW (acceptance and belonging growing up with CF). In addition, six CFRI-funded CF researchers from CHLA, USC, Stanford, UCSF, UCSD, and Mayo Clinic will share their work. We will have receptions, an awards banquet, and even a celebratory dance party! Held at Pullman San Francisco Bay (formerly Sofitel). Rooms are only $119 per night. To register, click here. Sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.

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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, supportive and fun environment for adults with CF and their friends and families, and well as CF caregivers. Enjoy presentations on topics impacting adults with CF, as well as yoga, art, rap sessions, exercise, and many other activities. 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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SEVERAL SCHOLARSHIP DEADLINES APPROACHING! There is still time to apply to AbbVie’s Thriving Student Scholarship, as well as to the Boomer Esiason Foundation. There are many opportunities for college students with CF. For additional information about these opportunities, please click here.


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Tea artwork provided by Hannah M., 5 years old and living with CF.

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 and family 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. If you prefer to participate online, invite your friends and family to a virtual tea! 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, or sign-up online by clicking here.


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/ Ready to start? Click here!

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WE HAVE RECEIVED THOUSANDS OF DOLLARS THROUGH AMAZON SMILE! A percentage of every purchase you make on goes to CFRI! It really works – we receive steady contributions, and hope they will grow. Amazon Smile IS Amazon – your account remains the same; the only difference is that every time you shop, you are supporting CFRI – and it does not cost you a single cent! To go to Amazon Smile, click here.



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:  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 ( ), or click on the link at the bottom of the page.



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


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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