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

 

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CALL TO ACTION: LET YOUR ELECTED OFFICIALS KNOW THAT CURRENT PROPOSALS FOR HEALTHCARE LEGISLATION PUT THOSE WITH CF – OR ANY PRE-EXISTING CONDITION – AT RISK.
Congress is discussing proposals for future healthcare legislation that remove many of the protections contained within the Affordable Care Act (ACA). Proposals currently being discussed include allowing the sale of health insurance across state lines, a return to high-risk pools, implementing continuous coverage protections, ending the individual insurance mandate, and the placing of per capita limits on Medicaid payments to states. All of these proposals could be catastrophic for many members of the cystic fibrosis and rare disease communities. In fact, they could be catastrophic for anyone who has a pre-existing condition including cancer, high blood pressure and diabetes. Please click here to write to your Congress Members and Senators today, urging them to reject proposals that will put those with pre-existing conditions at risk.


RESEARCH UPDATE


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RESEARCHERS AT UC RIVERSIDE HAVE DEVELOPED A METHOD TO DETECT NONSENSE-MEDIATED RNA DECAY (NMD) EFFICIENCY INSIDE CELLS. According to a press release, MND, “is a processing pathway in cells that, like a broom, cleans up erroneous RNA to prevent its productive conversion into an aberrant protein, which could lead to disease.” In some diseases, MND is very useful, but with cystic fibrosis, it is believed that getting rid of the junk RNA leads to a full loss of the gene function; a decreased level may be more beneficial. The researchers’ have discovered how to detect NMD efficiency in a cell, and according to Dr. Sika Zheng, the method “can screen a host of chemicals and allows us to identify molecules that regulate this efficiency.” For more information, click here.

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RESEARCHERS HAVE FOUND THAT SEVERAL ANTI-INFECTIVE AGENTS AND NATURAL COMPOUNDS ARE EFFECTIVE AT PREVENTING BIOFILM-ASSOCIATED EXOPHIALA (E.) DERMITITIDIS FUNGAL INFECTIONS. Studies of E. dermititidis have detected it in the lungs of 1% to 19% of CF patients, where it often develops a biofilm and colonizes the airways. Researchers in Germany tested several anti-infective agents and natural plant compounds and found that while none were highly effective at eradicating the biofilm, several agents – especially Mycamine, Coly-mycin M – were effective at preventing the creation of a biofilm. The results raise the question of whether these two agents should be used as an effective strategy to prevent biofilm-associated E. dermatiditis. For more information, click here.


MORE EVENTS AND PROGRAMS FOR THE COMMUNITY


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FUNDS AVAILABLE FOR FIVE SESSIONS OF COUNSELING! 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 family members (parents, siblings and spouses) are eligible. CFRI will cover individual co-pays or provide 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 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.

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THE RESPONSE TO OUR PODCASTS HAS BEEN PHENOMENAL! We will soon post our February episodes addressing personalized fitness plans for the CF community. Stay tuned. Podcasts are available on our Podbean site and YouTube channel. If you haven’t seen/heard them, you can click here or go to CFRI’s YouTube channel. Generously sponsored by Vertex Pharmaceuticals, Chiesi USA, Gilead Sciences, and Proteostasis Therapeutics with additional support for February’s episodes from 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 Clancy, MD, Kristin Riekert, PhD, Luke Hoffman, MD, PhD, Karen Von Berg, DPT, John Mark, MD, Paul Quinton, PhD, Cathy Chacon, RN, Carol Power, RT, Ray Poole, MBA, and Isa Stenzel-Byrnes, LCSW. We will have fantastic receptions, an awards banquet, and even a celebratory dance party! Our nationally renowned conference will be held at Pullman San Francisco Bay (formerly Sofitel San Francisco Bay). To register, click here. Sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and the Boomer Esiason Foundation.


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SCHOLARHIP APPLICATION TIME IS HERE! There are many scholarship opportunities for college students with CF, and several have March deadlines. Vertex Pharmaceuticals has launched the All in for CF Scholarship Program that provides $5,000 scholarships to help people with CF, and their families (siblings, caregivers, and children) in pursuing two-year, four-year or graduate degrees. The Boomer Esiason Foundation has several scholarship programs, as does AbbVie, the Bonnell Foundation, Living Breath Foundation, the CF Scholarship Foundation, and more. For more information about these opportunities, please click here.

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MAY 5TH THROUGH MAY 7TH - REJUVENATE YOURSELF! JOIN CFRI AT ITS THIRD ANNUAL EMBRACE RETREAT FOR MOTHERS OF CHILDREN AND ADULTS DIAGNOSED WITH CYSTIC FIBROSIS. This retreat was called “transformative” and “life changing” by attendees last year. Held at the beautiful Vallombrosa Center in Menlo Park, California, this incredible weekend includes art projects, yoga, journaling, CF resources, music, support, and respite time with women who share the CF path. $150 includes two nights in a single occupancy room, meals, workshops, and retreat events (limited to 25 rooms). $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 Friday, April 21. For more information, call 855.237.4669, or email cfri@cfri.org Made possible through grants from Vertex Pharmaceuticals, AbbVie and Gilead Sciences.


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LOVE HEALS! THIS VALENTINES DAY, SHOW YOUR CARING HEART AND SUPPORT CFRI’S CF SUMMER RETREAT. Held July 30 – August 5, 2017, at Vallombrosa Center in Menlo Park, California, the CF Summer Retreat provides a safe and supportive environment for those with CF and their friends/families/caregivers. Presentations by CF experts, yoga, art, rap sessions, exercise, and other activities make this a fun and meaningful event. Registration coming soon; in the meantime, to contribute to the Love Heals Campaign, click here. The CF Summer Retreat is generously sponsored by AbbVie.


SUPPORT CFRI!


 

HOST AN EASY FUNDRAISER AND HELP THOSE WITH CF TO REACH NEW HEIGHTS! Why not host a special dinner party, and in the invitations, ask those who attend to make a donation to CFRI? Many small fundraisers can have a big impact: from yard sales to bake sales, 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 Mary Convento at CFRI to discuss your idea at 650.665.7559/mconvento@cfri.org. Ready to start? Click here!

 


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SHOP AMAZON SMILE AND SUPPORT CFRI! A percentage of every purchase you make on Smile.Amazon.com goes to CFRI! Amazon Smile IS Amazon – it simply gives 0.5 of your total purchase to CFRI in support of our programs. It really works – we receive steady contributions, and hope they will grow. To go to Amazon Smile, click here.



 
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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