CF Caregivers Support Groups
Third Tuesday of Every Month
Oct 16 • Nov 20 • Dec 19
A monthly CF Caregivers Support Group, facilitated by a social worker well versed in issues facing CF caregivers.
Two sessions to choose from:
- For Parents/Caregivers of Children :: 5:00 pm – 6:00 pm (PST)
- Parents/Partners/Spouses of Adults with CF (participate in person or by phone) :: 6:00 – 7:00 pm (PST)
Sponsored by Vertex Pharmaceuticals, Gilead Sciences and Genentech.
CFRI’s Enchanting Adventure at Nestldown
September 29, 2018, 5:00 pm – 10:00 pm
22420 Old Santa Cruz Highway
Los Gatos, CA 95030
AN ENCHANTING ADVENTURE AT NESTLDOWN A PHENOMENAL SUCCESS! CFRI’s annual gala, held at the breathtakingly beautiful Nestldown estate brought together 155 champions for a CF cure. Chris Chmura, of NBC Bay Area, emceed the evening. Paul Mohabir, MD, was honored as our 2018 CF Champion, while Arek and Marta Puzia shared their journey as parents to Natalie, 4 years old and living with CF. Gina Serrato introduced the Latin duo “IndiviDuo,” who debuted a new CF anthem for a cure, “The Way I See the World.” The auction raised vital funds for CF research, with spirited bidding on incredible packages generously donated by numerous businesses.
By the end of this magical evening, over $90,000 had been net to support CFRI’s research, education and support programs. We thank our generous sponsors, Vertex Pharmaceuticals, AbbVie, Chiesi USA, Gilead Sciences, Genentech, Foundation Care Pharmacy, Francine and Joel Bion, Heritage Bank of Commerce, Express Scripts-Accredo, Homewood Suites, and our media sponsor, NBC Bay Area. For a complete list of sponsors and donors, please click here.
For future event sponsorship opportunities, please contact Tony Adessa, CFRI Development Manager, at firstname.lastname@example.org or 650.665.7586.
Externally-Led Patient-Focused Drug Development Meeting on Cystic Fibrosis
October 29, 2018
8:30 am – 3:30 pm ET
College Park Marriott Hotel and Conference Center
CFRI’s Patient Focused Drug Development (PFDD) Meeting on Cystic Fibrosis (CF) will integrate the patient voice into the drug development and review process during a one-day live streamed, interactive meeting of individuals with CF, parents/caregivers of those with CF, CF clinicians, and FDA representatives, during which the patient voice and perspective will be shared and expanded upon in relation to the disease, current therapies and future therapies
The Externally-Led PFDD Meeting on CF provides the opportunity to incorporate the experience of people with CF in a collaborative manner during benefit-risk decisions, and to constructively expand communication between the FDA and the CF patient community.
Registration is free. Attendees must register in advance to either attend in person, or attend via live streaming. Those participating online will have the opportunity to provide input. Due to cross-infection risks, individuals with cystic fibrosis are asked to participate online.
Sponsorship opportunities are available; levels range from $2,500 – $27,500. For information contact Tony Adessa at email@example.com.
Sponsored by Vertex Pharmaceuticals (Platinum Sponsor); Gilead Sciences (Gold Sponsor); Proteostasis Therapeutics (Silver Sponsor), Genentech (Silver Sponsor), Ionis Pharmaceuticals (Silver Sponsor), and Synspira (Silver Sponsor); Santhera Pharmaceuticals (Bronze Sponsor), Translate Bio (Bronze Sponsor), Eloxx Pharmaceuticals (Bronze Sponsor), Mylan Pharmaceuticals (Bronze Sponsor, through an independent medical education grant), and AzurRx BioPharma (Bronze Sponsor).
Physical Therapy for CF Health
5-Week Interactive Online Class
Begins Saturday, November 3, 2018
11:00 am – 12:15 pm PST
Physical Therapists are invaluable members of the CF care team. This class, taught by Nicole Irizarry, DPT (Optimize PT) and Karen von Berg, DPT (CF Center, Johns Hopkins Medical Center), will help those with CF to address some of the more common health issues that may not always be addressed in clinic. Topics include endurance, strength and flexibility, and managing posture, chronic pain and urinary incontinence. Free to individuals with CF, as well as parents, spouses, partners, and siblings of those with CF.
Tentative class schedule:
November 3: Urinary Incontinence: How to Stay Dry
November 10: Why do I Have Back Pain, and What Can I Do About It?
November 17: Low and High Intensity Exercise: What’s Best For Me?
December 1: Why Breathing Exercises Are Important
December 8: The Importance of Posture and Using Yoga to Help You
CFRI’s Breathe In – Work Out CF Wellness Initiative is made possible through a Circle of Care Grant from Vertex Pharmaceuticals.
For information or to register for these events, please email firstname.lastname@example.org or call 650.665.7576.