Sign up link
DonateNow

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

Triple the Impact of Your Gift

JOIN US ON THURSDAY, APRIL 12 AT 6:15 PM FOR A PODCAST RECORDING EVENT. The subject is “Paying for CF: Financial Resources for the CF Community.” Our speakers are Tiffany Raffino, LCSW, CF Social Worker at UCSF, and Ann Robinson, mother of an adult son with CF and CF mentor to many. The recording will take place at our office at 1731 Embarcadero Rd, Suite 210 in Palo Alto, CA. CF Infection Control Policies apply – please check our website for details. Refreshments will be served. Sponsored by Vertex Pharmaceuticals, Gilead Sciences, and Chiesi USA, with additional support from Genentech and Foundation Care Pharmacy.

Triple the Impact of Your Gift

REGISTER FOR CFRI’S CF FAMILY EDUCATION CONFERENCE – SCHOLARSHIPS AVAILABLE! Our 31st National CF Family Education Conference will take place August 3 – 5, 2018 at the luxurious Pullman Hotel in Redwood City, CA. A nationally renowned slate of speakers will discuss the CF pipeline, CF and pain, the future of CFTR modulators, coping with isolation, and fungal infections and CF. You’ll also 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. Limited scholarships which include hotel rooms are available – apply now! For more information and to register, click here. Sponsored to date by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie and the Boomer Esiason Foundation.

Triple the Impact of Your Gift

HONOR MOTHERS AND INSPIRE HOPE! CFRI’s annual Mothers’ Day Celebration promotes awareness of CF among our friends and families, and is one of our most important fundraisers to support our vital services to the CF community. This year’s beautiful card was created by Gianna Gutierrez-Serrato, eight years old and living with CF. There are three ways to participate:

- If you would like to send cards to your friends and family, please click here. If you prefer to speak to a friendly person at CFRI, call Mary at 650.665.7559, or email cfri@cfri.org – we will provide everything you need.

- If you prefer to email your invitations, we have a wonderful online option which you can use by clicking here.

- If you are a Facebook user, encourage your Facebook friends to honor mothers by giving to CFRI. Simply copy the picture on the left onto your Facebook page and personalize your appeal as you like. Donations can be made to CFRI directly via Facebook or on our donation page.

RESEARCH UPDATE

compound

BACTERIA CAN PASS MEMORY OF BIOFILM FORMATION TO DESCENDANTS, STUDY SHOWS. The transmission of memory across generations helps the bacteria know how to attach themselves to surfaces and form communities called biofilms. Researchers at UCLA focused their study on Pseudomonas aeruginosa, a bacterium commonly found in CF patients’ airway. Click here for more information.

compound

VOLUNTEERS NEEDED AT UCSF FOR CF DRUG DEVELOPMENT PROGRAM. UC San Francisco is seeking CF volunteers who have two copies (homozygous) of W1282X, G542X, N1303K, or I1234V for a paid study that requires a single research visit to their San Francisco Mission Bay campus. At that visit a brief nose brushing is used to collect cells for culture that are studied for their response to existing and new candidate CF drugs. A travel stipend may be available. If you think you qualify and are interested in contributing to the development of new drugs for CF, please call Joseph Dang at 415-476-3329.

 

compound

THE U.S. FOOD AND DRUG ADMINISTRATION HAS GRANTED FAST TRACK DESIGNATION TO PROTEOSTASIS THERAPEUTICS’ TRIPLE COMBO TREATMENT PROGRAM FOR CYSTIC FIBROSIS. The therapy in development includes an amplifier, corrector, and potentiator of the CFTR gene which could address multiple mutations. The therapeutic agents are known as PTI-428, PTI-801, and PTI-808. "Fast Track designation represents another positive step for the development of our triple combination therapy and underscores the serious unmet need that remains for the vast majority of CF patients," said Meenu Chhabra, president and chief executive officer of Proteostasis Therapeutics. To read a press release, click here.

CFRI EVENTS AND PROGRAMS

Triple the Impact of Your Gift

NEW PODCASTS AVAILABLE ON HEMOPTYSIS AND COPING WITH DECLINING LUNG FUNCTION! Paul Mohabir, MD, Director of the Adult CF Center at Stanford, provides an important overview of cystic fibrosis and hemoptysis, while Elyse Elconin Goldberg shares her personal experience and insights in, “Staying Positive through Declining PFTs: My Pre-Double Lung Transplant Experience.” To watch/download on our Podbean channel, click here. To watch on our YouTube channel, click here. CF Community Voices is sponsored by Vertex Pharmaceuticals, Chiesi USA, and Gilead Sciences. Additional support for these podcasts was provided by Novartis and Genentech.

Triple the Impact of Your Gift

CF CAREGIVERS SUPPORT GROUPS TUESDAY, APRIL 17TH: CALL IN FROM ACROSS THE U.S. Groups held monthly: 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. To participate by phone, call 1-650-736-4444 – Access code: #070111028. To attend in person, go to the 1st Floor Conference Room, 730 Welch Rd, Palo Alto, CA. Made possible through grants from Vertex Pharmaceuticals, Genentech, contributions through CFRI’s CF Quality of Life Program, a Living Legacy of Peter and Kathy Judge.

Triple the Impact of Your Gift

CFRI OFFERS EIGHT SESSIONS WITH LICENSED THERAPIST OF CHOICE. CFRI provides up to $120 per session for eight sessions of counseling to individuals with CF (children and adults), and their friends/family, with the licensed provider of their choice. Participants must live in the United States. For information, click here, or email svaeth@cfri.org. Made possible by grants from Vertex Pharmaceuticals, Global Genes, Gilead Sciences, and Genentech, as well as through contributions from individual donors.

Triple the Impact of Your Gift

JOIN US AT OUR CF SUMMER RETREAT - AUGUST 16th THROUGH AUGUST 21st. 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. Click here to register. Sponsored by AbbVie and Gilead Sciences.

ADVOCACY

compound

HAVE YOU RAISED YOUR VOICE YET? ENCOURAGE YOUR SENATORS TO OPPOSE “RIGHT TO TRY” LEGISLATION. “Right to Try” legislation is strongly opposed by CFRI and over 100 patient groups because it does not safely help patients access experimental therapies, and puts those who use them at potential risk. The proposed legislation would create an unnecessary and far less safe means to access investigational therapies outside of clinical trials, as well as sharply reduce the ability of the Food and Drug Administration (FDA) to protect patients. Take action now!

Triple the Impact of Your Gift

CFRI TO HOLD CF AWARENESS DAY AT MISSOURI STATE CAPITOL ON TUESDAY APRIL 17: SEEKING MEMBERS OF CF COMMUNITY TO JOIN US! Advocates will meet for a day in the state capitol in Jefferson City to raise awareness among our elected officials about the challenges faced by those impacted by CF. Advocates will meet with representatives to share their experiences as parents, caregivers, and individuals with CF. Your stories are powerful! If you are interested in participating, please email Siri Vaeth at sirimvaeth@cfri.org.

OTHER PROGRAMS FOR THE CF COMMUNITY

Triple the Impact of Your Gift

FREE “MEET THE EXPERTS” PATIENT/FAMILY FORUM ON “LIVING WELL AND LUNG HEALTH” FEATURES AN OPPORTUNITY TO MEET WITH DOUG CONRAD, MD. “Meet the Experts” is part of the American Thoracic Society’s annual conference, taking place May 18 – May 23, 2018 in San Diego CA. The program takes place on Saturday, May 19th from 10 a.m. to 2:00 pm. Dr. Conrad will meet with members of the CF community on Saturday, May 19th from noon to 2:00 pm PST. Please RSVP to cwhite@thoracic.org no later than Wednesday, May 9, 2018. For more information, click here.

Triple the Impact of Your Gift

APPLICATIONS NOW AVAILABLE FOR 2018 ABBVIE CF SCHOLARSHIPS. The application period will run for six weeks, closing on May 9, 2018 at 11:00am EST. As in previous years, AbbVie will select 40 applicants to receive $3,000 for use during the 2018-2019 academic year based on creativity, academic excellence, community involvement and the ability to serve as a positive role model for the CF community. For more details and to apply, click here.

Triple the Impact of Your Gift

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.

SUPPORT CFRI!

Triple the Impact of Your Gift

DONATE YOUR BIRTHDAY 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.

Guide Star - CFRIIndependent Charities of AmericaCharity Nav - CFRICFC Logo
Home | About Us | Research | Education | Advocacy | Support | Events | About CF | Donate | Contact Us
©Cystic Fibrosis Research, Inc., 1999- All Rights Reserved | Privacy Statement | Disclaimer

 

 

```````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````7