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

TOOLS FOR COPING WITH DEPRESSION AND ANXIETY - “LIVING MINDFULLY WITH CF.” This six-week online class, starting Tuesday, March 3, draws upon Mindfulness Based Stress Reduction techniques, focusing these practices specifically to living with CF. Taught by the phenomenal Julie Desch, MD, who herself lives with CF, this class helps to reduce anxiety and depression and is offered free of charge to individuals with CF and their family members. Previous attendees are also encouraged to register. For more information or to register, click here. Sponsored to date by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Horizon Therapeutics.

REGISTRATION NOW OPEN FOR CFRI’S NATIONAL CF EDUCATION CONFERENCE! Our 33rd National CF Education Conference will take place July 31 – August 2, 2020 in Redwood City, CA. In addition to updates on new medical discoveries and therapies, you’ll have the opportunity to meet representatives from pharmaceutical and medical technology companies, as well as network with peers from the CF community. Early bird registration is $185. For more information and to register, click here. Limited scholarships available – click here for more information. Sponsored to date by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and the Ionis Pharmaceuticals.

NEW CONFERENCE PROMO VIDEO! Are you interested in learning more about CFRI’s National CF Education Conference? Are you thinking about attending but want to know what the conference is all about before you sign up? Watch our short Conference promo video here. Video made possible by Vertex Pharmaceuticals and Chiesi USA.

CFRI PROGRAMS AND EVENTS

SUPPORT GROUP FOR ADULTS WITH CF MEETS MONDAY, FEBRUARY 17. The topic this month is "Coping with Disease Progression." The group, facilitated by Kate Yablonski, LCSW, is open to participants nationwide, and meets from 6:00 pm PST to 7:30 pm (9:00 pm – 10:30 pm EST). To attend by phone or video call, go to https://zoom.us/j/484314120. Please log in early to make sure there are no technical problems.

CF CAREGIVERS SUPPORT GROUPS TUESDAY, FEBRUARY 18. The topic this month is "Coping with Disease Progression." The groups will be facilitated by Kate Yablonski, LCSW. Parents of Children meet from 5:00 pm – 6:00 pm PST; to attend by phone or video, go to https://zoom.us/j/555433812. Parents/ Spouses/ Partners of Adults meet from 6:00 pm – 7:00 pm PST; to attend by phone or video, go to https://zoom.us/j/832557859. Please log in early to make sure there are no technical problems. Sponsored by Chiesi USA, Genentech, Gilead Sciences, Horizon Pharma, Vertex Pharmaceuticals, and contributions to CFRI’s CF Quality of Life Program, a Living Legacy of Peter and Kathy Judge.

CFRI’S COUNSELING SUPPORT PROGRAM NOW OPEN FOR 2020 PARTICIPANTS. Children and adults with CF as well as their family members (parents, siblings, spouses/partners) are eligible to receive financial support for six individual therapy sessions per year with a licensed provider of your choice. CFRI may cover up to $120 per session for six sessions. Participants must live in the United States. For more information, click here, or email [email protected]. Made possible by grants from Vertex Pharmaceuticals, Genentech, and Chiesi USA, as well as through contributions from individual donors.

LIMITED SPACE AVAILABLE! REGISTRATION NOW OPEN FOR EMBRACE RETREAT FOR MOTHERS OF CHILDREN AND ADULTS WITH CF. CFRI’s 6th annual Embrace Mothers Retreat, with the theme "Change - Connection – Community," will take place from May 1 to May 3, 2020, at the Vallombrosa Retreat Center in Menlo Park, California. The retreat offers journaling, CF education and resources, support, art, yoga, music, and respite time with women who share the CF path. To register, click here. For more information, call 650.665.7576, or email [email protected] Sponsored to date by Vertex Pharmaceuticals and AbbVie.

RESEARCH UPDATES

S. PSEUDOPNEUMONIAE BACTERIA CAN CAUSE PULMONARY EXACERBATIONS IN CF PATIENTS. A recent small-scale study concluded that the bacteria streptococcus pseudopneumoniae should be included in the panel of opportunistic bacteria that can cause pulmonary exacerbations in people with cystic fibrosis. S. pseudopneumoniae is one of the most common types of bacteria found in the airways of children with CF during their first two years of life. Analyses indicate that the bacteria is susceptible to several antibiotics, yet resistant or less susceptible to erythromycin, tetracycline, and penicillin. For more information, click here.

U.S. EXPANDS USE OF CORONAVIRUS DIAGNOSTIC TEST. The U.S. Food and Drug Administration (FDA) has granted emergency use approval for state public health laboratories to start testing for the coronavirus using kits developed by the Centers for Disease Control and Prevention (CDC). The approval may help speed up testing in the United States for the virus, which has infected 11 people in the country as of February 3. The World Health Organization has declared the flu-like virus a global health emergency, and experts say much is still unknown, including how the

virus is transmitted and how deadly it is. To read more, click here.

ADVOCACY

RARE DISEASE WEEK FAST APPROACHING! Cystic fibrosis is a rare disease, defined by the U.S. government as a disease that impacts less than 200,000 people in the United States. During the last week of February, advocates representing hundreds of rare diseases will gather in Washington DC to meet with representatives to raise awareness of the issues they face. Siri Vaeth, CFRI's executive director, will be among the participants, to highlight issues related to access and care for our CF community. For more information on issues impacting individuals living with rare disease, click here to visit the National Organization for Rare Disorders (NORD) website, of which CFRI is a proud member.

SUPPORT CFRI

DONATE YOUR BIRTHDAY - OR ANY OTHER SPECIAL EVENT - TO CFRI ON FACEBOOK. JOIN OUR BIRTHDAY PARTY FUNDRAISING CLUB! CFRI’s Birthday Party Fundraising is free and easy to set-up on Facebook to involve your friends in supporting CFRI. Simply go to facebook.com/cfri.org and scroll down to the “Fundraisers” section and click “Create.” To participate click here.

COMBINED FEDERAL CAMPAIGN: PLEASE DONATE TO CFRI! We ask federal employees who donate through the Fall 2019 Combined Federal Campaign (CFC) to designate CFRI when you give. CFRI is included in the 2019 CFC approved charity list for the donors as a member of America’s Best Charities. Our CFC code number is 76262. Thank you for your support!

SHOP AMAZON SMILE AND SUPPORT CFRI! A percentage of every purchase you make on AmazonSmile goes to CFRI! It really works – we receive steady contributions, and hope they will grow. To go to Amazon Smile, click here.

OTHER PROGRAMS FOR THE CF COMMUNITY

MAKE AN IMPACT ON RARE DISEASE DAY! February 29, 2020 is Rare Disease Day! Rare Disease Day is all about raising awareness and creating change for those impacted by rare disease. The National Organization for Rare Diseases (NORD) has many events planned across the country leading up to and on Rare Disease Day. Click here for ways you can get involved and show your solidarity with the rare disease community!

THE ASSISTANCE FUND PROVIDES FINANCIAL SUPPORT FOR HEALTH- RELATED EXPENSES – INCLUDING CF. The Assistance Fund helps patients facing high medical out-of-pocket costs by providing financial assistance for copayments, deductibles and other health-related expenses. Their mission is to provide critically or chronically ill individuals with access to therapies through a continuum of services and programs. To find out if you are eligible for financial assistance, call 855.845.3663, or complete an application on their website.

PATIENT ASSISTANCE PROGRAMS PROVIDE NEEDED SUPPORT. Please see the Patient Assistance Programs on our website for information on many programs from our partners, including Genentech, Vertex, AbbVie, Novartis, Chiesi USA, and RespirTech. For more information, click here.

This eNewsletter is generously sponsored to date by Vertex Pharmaceuticals, AbbVie, Genentech, and Chiesi USA.