Events

 

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CF Caregivers Support Groups

Third Tuesday of Every Month
 May 15 • June 19 • July 17 • Aug 21
 Sep 18 • 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)

LEARN MORE

Sponsored by Vertex Pharmaceuticals, Gilead Sciences and Genentech.

June, 2018

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Yoga for CF Health & Wellbeing

6-­Week Interactive Online Class

Begins Monday, June 11, 2018
6:15 pm – 7:45 pm PST

CFRI’s “Yoga for CF Health” is taught by Martha Modawell, Certified Yoga Instructor and mother of two children with CF. This class is free to individuals with CF, as well as parents, spouses, partners and siblings of those with CF. Get your mat and join your CF community members each week in a fun, healthy, and relaxing yoga session.

CLASS FULL  Check back in the fall!

CFRI’s Breathe In – Work Out CF Wellness Initiative is made possible through a Circle of Care Grant from Vertex Pharmaceuticals.

Physical Therapy for CF Health

5-Week Interactive Online Class

Begins Saturday, June 30, 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.

Class schedule:
June 30: Urinary Incontinence: How to Stay Dry
July 7: Why do I Have Back Pain, and What Can I Do About It?
July 14: Low and High Intensity Exercise: What’s Best For Me?
July 21: Why Breathing Exercises Are Important
July 28: The Importance of Posture and Using Yoga to Help You

CLASS FULL  Check back in the fall!

CFRI’s Breathe In – Work Out CF Wellness Initiative is made possible through a Circle of Care Grant from Vertex Pharmaceuticals.

July, 2018

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Living Mindfully with CF

Interactive Online MBSR-Themed Class
Created and Led by Julie Desch, MD

Begins Tuesday, July 17th, 2018
Weekly Thereafter
6:15 pm – 7:45 pm PST

This class draws upon Mindfulness-Based Stress Reduction (MBSR) techniques, focusing these practices specifically to living with CF. Free for individuals with CF and CF Parents/Spouses/Caregivers. All registrants must be at least 16 years old.

  • Class One (July 17): Introduction to Mindfulness
  • Class Two (July 24): Mindfulness of Body and Breath
  • Class Three (July 31): Mindfulness of Thinking
  • Class Four (August 7): Mindfulness of Emotion
  • Mini-Retreat (Saturday, August 11): Morning Meditation
  • Class Five (August 14): Working With Uncertainty
  • Class Six (August 21): Self-Compassion and Resilience

CLASS FULL Check back in the fall!

Sponsored by Vertex Pharmaceuticals, Genentech and Gilead Sciences.

August, 2018

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CFRI 31st National CF Family Education Conference

Bridges to the Future

August 3 – August 5, 2018

Pullman San Francisco Bay Hotel
Redwood City, CA

A weekend conference that brings together those impacted by CF – including patients and families – with CF scientists, clinicians and experts in the field of CF from across the United States. 

REGISTER NOW

Click on the following link to book your luxury room at Pullman. Price shown is based on 4 nights. To receive your specific CFRI rate, go to the box under “Your Stay” in the upper right-hand corner, and edit to show the nights you will be staying: http://tinyurl.com/CFRI-2018. Go to the bottom of the page after you have entered your dates, and click on Check Prices. It will bring up CFRI prices. You may also call the hotel directly at 650.598.9000 to book your reservation.

Sponsored to date by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and the Boomer Esiason Foundation.

2018 CF Summer Retreat

August 16 – August 21, 2018

Vallombrosa Center
Menlo Park, CA

CF community gathers in a safe and welcoming environment that helps enhance positive coping skills, social support and education for people who share common experiences with CF.

REGISTER NOW

Sponsored by AbbVie and Gilead Sciences.

POUND CF

6-Week Interactive Online Class

Begins Thursday, August 23, 2018
6:15 pm – 7:15 pm PST

POUND® is a fun, high energy, easily adaptable, cardio jam session inspired by the infectious and energizing rhythm of playing the drums. The music and drumming takes exercise to a whole new level. This class will be taught by Amy Rad, MA (Kinesiology), a certified exercise physiologist and certified Pound instructor. Free to individuals with CF, as well as parents, spouses, partners, and siblings of those with CF. All participants receive a set of POUND Ripstix. To watch a brief video about POUND, go to: http://tiny.cc/t8o3ty.

CLASS FULL

CFRI’s Breathe In – Work Out CF Wellness Initiative is made possible through a Circle of Care Grant from Vertex Pharmaceuticals.

Knowledge in Motion

6-Week Interactive Online Class

Begins Wednesday, August 29, 2018
6:15 pm – 7:30 pm PST 

Through diaphragmatic breathing exercises and a combination of strength, endurance and flexibility training we can help improve quality of life in individuals with CF. Knowledge in Motion is geared to help educate clients on ways to kickstart their exercise routine and give them road maps to help them reach their goals. Taught by Taylor Lewis, MA (Kinesiology) from the Cystic Fibrosis Fitness Institute, this class is free to individuals with CF, as well as parents, spouses, partners and siblings of those with CF.

CLASS FULL

CFRI’s Breathe In – Work Out CF Wellness Initiative is made possible through a Circle of Care Grant from Vertex Pharmaceuticals.

September, 2018

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CFRI’s Enchanting Adventure at Nestldown

September 29, 2018, 5:00 pm – 10:00 pm (Dancing 8:30 pm – 10:00 pm)

Nestldown
22420 Old Santa Cruz Highway 
Los Gatos, CA 95030

CFRI’s signature Gala event will take place at an extraordinary estate above Los Gatos, CA. Merriment will abound for the 160 attendees, united in their commitment to cystic fibrosis (CF) research and services as well as their enjoyment of gourmet food and fine wine.

We are honoring Paul Mohabir, MD, Adult CF Center Director at Stanford, as CFRI’s 2018 CF Champion.

Mark your calendars for this very special opportunity to support CFRI in a spectacular venue, and help find a cure for those impacted by CF, the most common fatal genetic disease in the U.S.

Sponsorships and tickets available! Please click Buy Tickets or contact Tony Adessa, CFRI Development Manager, at tadessa@cfri.org or 650.665.7586.

BUY TICKETS

Sponsored to date by Vertex Pharmaceuticals, AbbVie, Chiesi USA, Gilead Sciences, and NBC Bay Area.

October, 2018

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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

Hyattsville, Maryland

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 tadessa@cfri.org.

REGISTER NOW

Sponsored by Vertex Pharmaceuticals (Platinum Sponsor), Gilead  Sciences (Gold Sponsor), Proteostasis Therapeutics (Silver Sponsor), and
Santhera Pharmaceuticals (Bronze Sponsor), Translate Bio (Bronze Sponsor), Eloxx Pharmaceuticals (Bronze Sponsor), Mylan Pharmaceuticals (Bronze Sponsor).

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For information or to register for these events, please email cfri@cfri.org or call 650.665.7576.