Wednesday, May 27, 2015

MAY IS CYSTIC FIBROSIS AWARENESS MONTH!


brought to you courtesy of the Cystic Fibrosis Research. Inc

This week we seek nominations for our CFRI Volunteer of the Year Award as well as our CF Professional of the Year Award, provide research updates, invite you to our 28th National Cystic Fibrosis Family Education Conference, continue our search for “CFRI Ambassadors,” announce the online posting of our Pediatric CF Education Conference, promote clinical trial opportunities, and share our other exciting programs and events!

SEEKING NOMINATIONS FOR CFRI VOLUNTEER AND CF PROFESSIONAL OF THE YEAR
Two prestigious awards will be presented at CFRI’s 28th National Cystic Fibrosis Family Education Conference on August 1, 2015. The Dave Stuckert Award will be presented to a CFRI volunteer who has made outstanding contributions to the CFRI community through education, outreach and support. The CF Professional of the Year Award will be presented to an individual who has made an outstanding contribution in the field of cystic fibrosis through education, outreach, support, medical expertise, clinical practice, or research. Please send your nominations of 100 - 150 words or less to Siri Vaeth Dunn atsvdunn@cfri.org by June 30th. For more information, please click here.

RESEARCH UPDATE
▶ CF researchers in the UK will livestream the announcement of their landmark gene therapy trial on May 30th. In a rare move, researchers will take the results of their research directly to the CF community. Hosted by the Cystic Fibrosis Trust, scientists will share the much-anticipated results of the eight-month clinical trial that evaluated Wave 1 CF therapy, in which a corrected copy of the gene related to CF is inserted to substitute for the defective gene. After the webcast, Professor Eric Alton – who will be familiar to those who heard him speak several years ago at CFRI’s annual education conference – will answer questions from viewers. For more information, click here.
▶ Researchers from Oregon State University (OSU) in Corvalis and Aradigm Corporation have announced the results of their study of the effectiveness of Lipoquin® and Pulmaquin®, investigational drugs for the treatment of non-tuberculous mycobacteria (NTM). While NTM is very common in the environment, for those with cystic fibrosis it often causes severe pulmonary infections, the most common symptoms of which are fever, cough, hemoptysis, weight loss, fatigue, and night sweats. Pulmonary NTM infections can cause irreversible bronchiectasis. Results of the study with mice demonstrated that the use of Lipoquin ® and Pulmaquin ® reduced the growth of the bacterium. Said Dr. Luiz Bermudez, professor of Biomedical Sciences at OSU, "I am very pleased that the encouraging effects of Lipoquin and Pulmaquin against PNTM in the biofilm and macrophage in vitro assays have been confirmed with this short treatment in our animal model. This test system was previously evaluated and demonstrated to provide results comparable to the results obtained in humans.” Studies will continue with this promising therapy. For more information, click here.

SUPPORT CFRI!
CFRI’s 40th Anniversary Gala, to be held at the stunning Carolands chateau on September 25,will feature gourmet small plates, fine wines and champagne, fabulous entertainment -- including Tammy Nelson from Beach Blanket Babylon in San Francisco --  and an exciting live auction! Please join us at one of the most beautiful properties in the state! This event is expected to sell out. To purchase tickets, or to find out about the many sponsorship opportunities available, click here. All funds raised will support CFRI’s CF research, education and support programs. Generously sponsored by NBC Bay Area, Vertex Pharmaceuticals, AbbVie, and Chiesi USA.
CFRI Continues to Seek Ambassadors! CFRI’s office is in California, but our reach is global. We need your help as a CFRI Ambassador in your community. As an ambassador, you would actively work with your CF center to distribute CFRI materials, and discuss CFRI’s programs with your fellow patients, caregivers and members of the care team. You could also present at your center’s CF Education Day. Providing presentations/discussions about CFRI and our services to a group of 10 or more friends, patients, associates, business/service groups, etc. is also vital. Those of you who live outside of the United States are also encouraged to participate! For more information, contact Mary Convento at mconvento@cfri.org.
Mother's Day may have passed, but the ability to honor mothers and help support CF research and education has not! Please join us as a Tea Sender, and help us to reach our goal of $175,000. Pleaseclick here or call 855.237.4669, and we will send you everything you need, including beautiful invitations, teabags, CFRI information, and more. CFRI's Mothers' Day Tea lasts far beyond May 10th; you can send invitations to your friends and family in the weeks to come asking them to enjoy a cup of tea, while reflecting on loved ones who live with cystic fibrosis. This reflection is capped off with a donation to CFRI in support of our research, education and support services to the CF community. We look forward to hearing from you! Please note: if you prefer to participate in a virtual tea, you can click here for more information.

OTHER PROGRAMS & SERVICES FOR THE CF COMMUNITY
 For those you who missed CFRI’s inaugural Pediatric CF Education Conference, held on May 16, you may now watch the presentations online! Topics include updates on the CF pipeline, transition for adolescents, respiratory therapy tools of the trade, and nutrition tips, all presented by some of the most renowned CF experts in the SF Bay Area. To watch the conference presentations, click here. 
    Please mark your calendar for the next CF Caregivers Support Group on Tuesday, May 26 from7:00 pm – 9:00 pm PST. The group meets at CFRI’s offices, but participants from across the country are encouraged to phone in and participate. Facilitated by Sruthi Veeravalli, MSW, the support group is part of CFRI’s Cystic Fibrosis Quality of Life (CFQoL) Program. To participate by phone, call 1-860-970-0300, and type in code 7738539#. Click here for a support group flyer. Please share with others. Made possible by Vertex.
    FREE counseling services available to the nationwide CF community! We are currently supporting services in 8 states! As part of CFRI’s CF Quality of Life Program, a Living Legacy of Peter Judge, CFRI will cover the cost per individual counseling session with your selected therapist. There is no charge to you! Thanks to Vertex, this funding is available through August, or when all funds have been expended, whichever comes first. Your selected therapist MUST contact CFRI prior to providing each subsidized session. For more information, click here or call CFRI at 650.404.9975. Made possible by Vertex.
    Teletherapy services! For those people interested in individual therapy, for whom traveling to a therapy session is not feasible, CFRI will underwrite HIPPA-compliant teletherapy sessions with licensed therapists. If you are interested in learning more about this program, and/or to receive a referral to a participating therapist, call Siri Vaeth Dunn at 650.404.9445. Made posssible by Vertex.
    High school seniors and college students: It’s scholarship time! The deadline for the 2015 AbbVie CF Scholarship is May 27th. For information about this scholarship, click here. For information on the many other scholarships available to the CF community, click here.

CLINICAL TRIALS: STILL RECRUITING!
Dr. Terry Robinson and Dr. Carlos Milla at Stanford Hospital are currently recruiting participants in California for a study to evaluate the effectiveness of a noninvasive lung function test, the Lung Function Index (LCI), as an effective screening tool for detecting early CF lung disease. The LCI results will be compared to CT scan results. If the LCI is able to effectively screen for early lung disease, it would limit the number of CF infants and toddlers needing more comprehensive chest CT evaluation. The goal is to enroll 30 CF infants/toddlers and test them over the first year. Follow-up testing would then be 2 years later. Testing will include LCI measurement and low-dose Controlled Ventilation Infant CT scan. For more information, call Colleen Dunn at 650.736.0388.
AbbVie is sponsoring a long-term observational study in cystic fibrosis patients who are participating in the Cystic Fibrosis Patient Registry to assess the occurrence and risk factors for a rare bowel disorder called fibrosing colonopathy (narrowing of the large intestine). Patients will be followed at their regular clinical care visits over a 10-year period and approached if they develop symptoms of fibrosing colonopathy for collection and use of further detailed information. For more information, click here.
PTC Therapeutics is enrolling over 200 patients with a CF nonsense mutation (nmCF) at research centers worldwide in the Ataluren Confirmatory Trial in CF (ACT CF). For more complete inclusion and exclusion criteria, click here
Vertex Pharmaceuticals is currently recruiting participants with CF who are homozygous for the F508del-CFTR mutation for a multicenter Phase 3 clinical trial designed to evaluate the efficacy and safety of VX-661 in combination with ivacaftor.  For a complete study description, please click here.
Dr. Jeff Wine is still seeking subjects who do not carry a CF gene for his study. Participants must live in the SF Bay Area. For more details, click here for a flyer, email wine@stanford.edu or call 650.725.2785.
Study: Osteopathic Manipulative Medicine (OMM) and CF Bowel Issues: A study exploring OMM and its impact on CF bowel obstruction (constipation) is currently enrolling participants. OMM is a gentle physical manipulation that has been shown to improve bowel function. Participants will earn $200 for participating.  For more details, click here, or contact Sara Modlin at sara.modlin@tu.edu or 925.456.4519.

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