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

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OUR THOUGHTS CONTINUE TO BE WITH THE VICTIMS OF HURRICANES HARVEY AND IRMA. The devastation is heartbreaking. For families living with CF, there is an added level of stress. The Boomer Esiason Foundation continues to raise funds and distribute CF-related supplies to impacted families. To donate to the fund, please click here.

 

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GLOBAL GENES HOSTS ITS 2017 RARE PATIENT ADVOCACY SUMMIT TO BRING TOGETHER ADVOCATES FROM THE RARE DISEASE COMMUNITY TO NETWORK, SHARE BEST PRACTICES AND COLLABORATE ON PROJECTS. Sue Landgraf, CFRI’s executive director is attending. As defined by the U.S. government, a rare disease is one that impacts less than 200,000 people in the United States. Cystic fibrosis, which impacts approximately 30,000 in the country, is one of approximately 7,000 identified rare diseases. It is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment, and there are currently less than 400 treatments approved by the FDA for those with rare diseases. The summit brings renowned speakers from a variety of disciplines to share knowledge and expertise. As a unified group, there is tremendous potential for encouraging new therapeutic development and review. We look forward to hearing from Sue! For more information on Global Genes, click here.

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CFRI RECEIVES PRESTIGIOUS GRANT FROM THE TAPROOT FOUNDATION TO UPDATE ITS WEBSITE TO BETTER SERVE THE CF COMMUNITY. This grant provides a team of IT experts to guide CFRI through the creative and technical aspects of a website overhaul, helping us to create a dynamic, engaging, relevant, and useful resource for the community. This in-kind pro bono work is valued at over $85,000. Please stay tuned – we hope to unveil the new site in the spring of 2018.

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BUY YOUR TICKETS TODAY! JOIN CFRI’S MOONLIGHT MASQUERADE ON 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, which includes passes to watch the filming of Big Bang Theory, Late Late Night with James Corden passes, fine wines, rare jewelry, nights at the Hilton, airline tickets, and a Bay Area sports package that includes signed memorabilia (Jerry Rice signed football anyone?). End the night on the dance floor with your friends. This will be a night to remember!

All proceeds support CFRI’s research, education, support, and advocacy programs to improve the lives of those with CF. $165 per person / $150 per person if you buy two tickets or more. Sponsorship packages are available, or host a table for ten. Call 650.665.7559 or click here. 

This is a 21-and-over event. Individuals with CF must adhere to CFRI’s specific Gala Cross Infection Control Policy and related procedures, which include time-sensitive medical and liability release forms. Please go to the registration page for specific information. Sponsored to date by Vertex Pharmaceuticals, AbbVie, Chiesi USA, Novartis Pharmaceuticals, Gilead Sciences, and NBC Bay Area.

RESEARCH UPDATE

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RESEARCHERS IN TORONTO DISCOVER LINK BETWEEN ACHROMOBACTER INFECTIONS AND SEVERE COMPLICATIONS. In recent years, an increasing number of individuals with CF have cultured Achromobacter. The Toronto study included 1,103 patients between 1997 and 2014 who were classified into three groups: those with no history of infection; those with intermittent infections; and those with chronic infections. They found that 7.3% of the patients cultured Achromobacter, and that alarmingly, those with chronic Achromobacter infections, “were twice as likely to die or need a transplant than those with no history of infection. To read more, click here.

CFRI EVENTS AND PROGRAMS

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OPEN TO CF CAREGIVERS NATIONWIDE: SUPPORT GROUPS ON SEPTEMBER 19th! Connect with others and find support. Groups are held the same day, but at different times: 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. You can call in or attend in person. Meetings are held in the 1st Floor Conference Room, 730 Welch Rd, Palo Alto, CA. Or participate by phone: 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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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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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.

 

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TAKE A BREAK FROM THE NETFLIX BINGE AND WATCH OUR CONFERENCE PRESENTATIONS ON OUR YOUTUBE AND PODCAST CHANNELS! Missed the conference? Watch nine presentations by our stellar experts on a range of CF-related topics, including adherence, the CF therapeutic pipeline, physical therapy, pathogens, and adjunctive therapies. Our presenters offer fascinating information, insights, tools, and perspectives! To watch, click here!

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.

ADVOCACY

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THE SENATE HAS UNTIL SEPTEMBER 30 TO REPEAL THE AFFORDABLE CARE ACT (ACA) WITH A SIMPLE MAJORITY, AFTER WHICH 60 VOTES WILL BE REQUIRED. With less than three weeks to attempt a final repeal it is likely that the September 30 deadline will pass without repeal of the ACA. Stay tuned!

SUPPORT CFRI!

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DONATE YOUR BIRTHDAY TO CFRI ON FACEBOOK! JOIN OUR BIRTHDAY PARTY FUNDRAISING CLUB! Birthdays are a wonderful cause for enthusiastic celebration, but for those of us who don’t need presents, having our friends give to help others in our name may be the best present of all. 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 down to the “Fundraisers” section. You’ll see other CFRI Facebook “I’m Donating My Birthday to Cystic Fibrosis” campaigns underway. To start your own campaign, just click on “Create” and follow the few simple prompts. That’s all there is to it: Facebook and CFRI handle everything from there! Please feel free to forward this information so as to spread the word. Again, to participate click here.

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HOST AN EASY FUNDRAISER AND HELP THOSE WITH CF TO REACH NEW HEIGHTS! 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%. Contact Tony Adessa at CFRI to discuss your idea at 650.665.7586 / tadessa@cfri.org. Ready to start? Click here!

OTHER PROGRAMS FOR THE CF COMMUNITY

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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 see the 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.

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COLLEGE TEAMS NATIONWIDE WANT TO INCLUDE YOUR CHILD WITH CF AS A MEMBER OF THE TEAM! TEAM IMPACT CAN IMPROVE THE CONFIDENCE, OPTIMISM AND SENSE OF BELONGING OF CHILDREN WITH CF – AND OTHER LIFE-THREATENING DISEASES. Children between the ages of 5 and 16 are drafted onto college athletic teams local to their homes, and to the greatest extent possible, children become a member of the team. Team Impact’s mission is to improve the quality of life for children – and their families – between the ages of 5 and 16 affected by a life threatening or chronic illness. For more information, click here to visit their website and watch an overview video. Team IMPACT wants to increase their outreach within the CF community across the nation. Please watch this video of a Team IMPACT child who battles CF in Colorado.

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