Events

 

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CF Caregivers Support Groups

Third Tuesday of Every Month
 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.

 

September, 2018

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Yoga for CF Health & Wellbeing

6-­Week Interactive Online Class

Begins Saturday, September 15, 2018
11:00 am – 12:30 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.

SIGN UP HERE  

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

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.

Check out our short Nestldown video

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), Genentech (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).

November, 2018

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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

SIGN UP HERE  

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

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