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

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NEED A MEANINGFUL FATHER’S DAY GIFT? ALL DONATIONS MADE THROUGH OUR SUMMER CAUSEVOX CAMPAIGN WILL BE MATCHED DOLLAR FOR DOLLAR! Those with CF are still struggling to breathe. Please support the search for a cure. All donations made by June 30th will be matched 100% by the Jessica Fredrick Memorial CF Research Challenge Circle and designated for CF research awards! Honor a father with a donation in his name. We need your help to find new therapies and a cure. To donate now, please click here.

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CALL FOR NOMINATIONS: CFRI VOLUNTEER AND CF PROFESSIONAL OF THE YEAR! These two prestigious awards will be presented at CFRI’s 30th National Cystic Fibrosis Family Education Conference on July 29, 2017. 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, while 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. Nominations (with a statement about your nominee)  should be sent to to Siri Vaeth Dunn at svdunn@cfri.org by June 30th. For more information, please click here.

 

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EARLY BIRD DISCOUNT ENDS JUNE 28th - REGISTRATION IS NOW OPEN FOR CFRI’s 30th NATIONAL CF FAMILY EDUCATION CONFERENCE JULY 28 – JULY 30, 2017  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).

YOUR REGISTRATION FEE COVERS THE FOLLOWING: Presentations, receptions, all meals – including the inspiring awards banquet – and even a celebratory dance party. $185 by June 28th / $215 after. Our nationally renowned conference will be held at Pullman San Francisco Bay. Rooms are only $119 per night. To register, click here.

In addition, six CFRI-funded CF researchers will share their work. Those who wish to register for the Research Track (which includes 8 presentations and lunch) pay $125 for two days/$75 for one day.

CEUs AVAILABLE FOR MEDICAL HEALTH CARE PROVIDERS ATTENDING CFRI’s 30th NATIONAL CF FAMILY EDUCATION CONFERENCE! CFRI’s 2017 National Conference has been approved by the California Board of Registered Nursing, Provider Number CEP12165, for a total of 11.25 CA BRN CE contact hours (7/28=2 CE, 7/29=5 CE & 7/30= 4.25 CE). Stanford Health Care will charge the following fees for each participant separate from the CFRI conference fee: Friday – free (2 CEU); Saturday – $20 (5 CEU); Sunday – $20 (4.25 CEU). The CEPD online registration link for CEs will be available one month before the conference (June 28). CEPD requires a separate pre-registration online at their website. The CEPD cancellation policy still applies for the CE fees— see policy on their website: https://tinyurl.com/yakwxnfr. For questions specific to CEU, email Carole Nakamura MSN, RN, at cnakamura@stanfordhealthcare.org

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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PATIENT ASSISTANCE PROGRAMS PROVIDE NEEDED SUPPORT! With the health care landscape in flux, many in the CF community have experienced anxiety about drug coverage. Please go to our Patient Assistant Programs on our website for information on many patient assistance programs from our partners, including Genentech, Vertex, AbbVie, Novartis, Chiesi USA, and Respirtech. For more information, click here.

RESEARCH UPDATE

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Pro-QR RELEASES RESULTS OF TWO CLINICAL TRIALS WITH ITS DRUG CANDIDATE QR-101, INDICATING ITS SAFETY AND IMPACT IN IMPROVING CFTR ACTIVITY IN THOSE WITH CF WITH TWO COPIES OF THE F508DEL MUTATION. In a press release, Noreen R. Henig, MD, Chief Medical Officer of ProQR shared, “Last year, we demonstrated that QR-010 restores CFTR function as measured by a very specific assay, the nasal potential difference. Now we have shown that QR-010 can be detected in the blood following a single dose inhalation.  We believe these results support the potential that QR-010 can treat all manifestations of CF.” Enrollment of the Phase 1b study should be completed in the near future, and PROQR anticipates unblinding the study and reporting top-line data. For more information, click here.

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PHARMAXIS RECEIVES POSITIVE RESULTS FROM ITS INTERNATIONAL PHASE 3 CLINICAL TRIAL OF ITS DRUG BRONCHITOL (MANNITOL) INCLUDING AN IMPROVEMENT IN LUNG FUNCTION. At the conclusion of the 26-week trial, subjects’ FEV-1 had improved, as had measures of forced vital capacity (FVC). Pharmaxis will partner with Chiesi USA to seek Food and Drug Administration (FDA) approval in 2018. In a press release, Pharmaxis Chief Executive Officer Gary Phillips said, “Adult CF patients who experience deteriorating health or difficulty in complying with existing medications continue to require access to new treatment options and in this trial Bronchitol brought benefit to patients on top of their existing treatment regimen and had a good safety profile.” For more information, click here.

ADVOCACY

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URGENT CALL TO ACTION: THE SENATE CONTINUES TO WORK ON HEALTHCARE REFORM AS MEMBERS APPROACH THE MEMORIAL DAY HOLIDAY.  Your senators need to hear from you now regarding provisions that could negatively affect those with cystic fibrosis, rare disease communities, and the general population. Please raise your voice to make sure that any new legislation maintains critical protections for those with CF and preexisting conditions. Click here to contact your senator today.

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IT IS CRITICALY IMPORTANT THAT THE U.S. FOOD AND DRUG ADMINISTRATION (FDA) EXPEDITE critical importance of new therapies for the CF community and the urgent need to expedite the review and approval process for drugs for the CF community that have met clinical marks and achieved statistically significant success in phase 3 clinical trials. Dr. Janet Woodcock, Director of the Center for Drug Evaluation N Research at the FDA specifically wants to hear from the CF community regarding Vertex’s new tezacaftor/ivacaftor drug that showed significant success in its Phase 3 trials. To take action, click here.

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WE NEED YOUR HELP TO PASS HR 1223, THE OPEN ACT – ORPHAN PRODUCT EXTENSIONS NOW ~ ACCELERATING CURES & TREATMENTS! Time is critical for this legislation, which could help double the number of affordable treatments available to rare disease patients including those with cystic fibrosis (CF). The OPEN ACT has broad bipartisan support and is supported by 224 patient organizations, including CFRI. The OPEN ACT passed the House in July of 2015, but was not signed into law; the bill was reintroduced in the House in February 2017. It is estimated that 95% of rare diseases still have no treatments approved by the Food and Drug Administration (FDA). The OPEN ACT would create incentives for pharmaceutical companies to repurpose therapies for the treatment of life-threatening rare diseases – the most efficient and effective way to get needed drugs to the rare disease community, while presenting fewer risks to patients. Please contact your legislators to encourage them to support the OPEN ACT. To send a message now, click here.


CFRI EVENTS AND PROGRAMS

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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 svdunn@cfri.org or 650.665.7565. Generously underwritten by Vertex Pharmaceuticals and Genentech.

 

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NEW VIDEO PODCASTS ON FINDING BALANCE AS A MOTHER OF CHILDREN WITH CF, AND ON THE POWER OF DIAGNOSIS STORIES. In the latest videos, the perspectives of mothers of children with CF are explored and movingly shared. Both podcasts are part of CFRI’s Embrace Mother’s Retreat.  Podcasts are available on our Podbean site and YouTube channel. (Lisa Greene’s video is in the process of being uploaded to Podbean – to watch immediately go to our YouTube channel). Generously sponsored by Vertex Pharmaceuticals, Chiesi USA, Gilead Sciences, Proteostasis Therapeutics, and Genentech.

COMMUNITY PROGRAMS

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TAKE THE STRAW CHALLENGE! THOSE WITH ADVANCED CF LUNG DISEASE OFTEN SAY THAT IT FEELS LIKE BREATHING THROUGH A VERY NARROW STRAW – NEVER ABLE TO TAKE A FULL DEEP BREATH. In an effort to raise awareness of CF, “Through the Straw” was created. As described on the website: “By experiencing short-term discomfort, those who take the Through the Straw challenge get a short glimpse into the lives of CF patients and gain a new appreciation for something we regularly take for granted. The challenge is not intended in any way to represent the real struggles of those living with CF.”
How it Works
1 / Find or make a beverage that would be difficult to drink through a straw.
2 / Record yourself drinking it through the straw as fast as you can.
3 / Upload your video with the tag #throughthestraw and challenge your friends to do the same.
4 / Donate to a cystic fibrosis organization (CFRI!)
Join us in taking the straw challenge! Please share with your friends, family and colleagues. For more information, click here.

SUPPORT CFRI!

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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. 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 cfri@cfri.org, or sign-up online by clicking here.

 

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SAVE THE DATE! 32ND ANNUAL CF BENEFIT GOLF TOURNAMENT WILL BE HELD MONDAY, AUGUST 7th, AT THE LEGENDARY PASATIEMPO GOLF CLUB IN SANTA CRUZ. Participate in this incredible day of golf while raising funds for CFRI. This event is made possible by Scott Hoyt, long-time CFRI community member and General Manager at Pasatiempo; your registration includes lunch, golf at Pasatiempo (a top 100 course), wine and cheese tasting, dinner, and live auction. Many sponsorship opportunities are available. For more information, contact Scott Hoyt at dscott.hoyt@gmail.com or click here.

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SAVE THE DATE! CFRI’s Moonlight Masquerade, Saturday, October 28, 2017 Celebrate CFRI’s four decades of CF research progress. Enjoy gourmet delicacies, fine wines, fabulous entertainment, and delectable desserts. Honor our 2017 CF Champion, Dr. Rick Moss of Stanford. Bid in our exciting auction and end the night on the dance floor. All proceeds support CFRI’s research, education, support, and advocacy programs to improve the lives of those with CF. $165 per person / $300 per couple. Tickets available now! Expected to sell out. Sponsorship packages available. Call 650.665.7559 or www.cfri.org. Sponsored by Vertex Pharmaceuticals, AbbVie, Chiesi USA, & Novartis Pharmaceuticals.

HOST AN EASY FUNDRAISER AND HELP THOSE WITH CF TO REACH NEW HEIGHTS! From yard sales to lemonade stands, golf tournaments to footraces, many small fundraisers can have a big impact. We will recognize you and 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 or mconvento@cfri.org. 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 Smile.Amazon.com 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.



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DO YOU HAVE A CAR, BOAT OR RV YOU NO LONGER WANT OR NEED? DONATE IT TO CFRI! Your contribution is tax deductible, and we will coordinate the transfer of property. For more information, go to our website: http://www.cfri.org.



 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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