Events

 

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CF Caregivers Support Groups

Third Tuesday of Every Month
 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.

 

October, 2018

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Externally-Led Patient-Focused Drug Development Meeting on Cystic Fibrosis

October 29, 2018
College Park Marriott Hotel and Conference Center

Hyattsville, Maryland

Are you an individual with cystic fibrosis or a parent/caregiver of a person with CF? If yes, we want to add your experience and opinions to the Voice of the CF Patient Report that will be submitted to the Food & Drug Administration (FDA).

CFRI was honored to host an Externally-Led Patient-Focused Drug Development Meeting on Cystic Fibrosis with the FDA on October 29. During this interactive meeting of individuals with CF, parents/caregivers, clinicians, and FDA representatives, the patient voice was brought to those involved in the drug development and review process. Over 360 people participated via live-stream; emails and phone calls from across the nation broadened the discussion.

We want to include your voice! Over the next three weeks, CFRI seeks additional input addressing our community’s individual and collective experiences with cystic fibrosis. Please watch the meeting and participate in our poll.

The meeting is available for viewing here: https://www.youtube.com/watch?v=9EBhbzyvP1Q

Please participate in polling! Live polling provided very salient information about the disease experience. The following link will take you to an anonymous Survey Monkey containing all questions asked at the meeting. 

https://www.surveymonkey.com/r/HZZK9TS

Please join fellow members of our CF community to help FDA representatives better understand the impacts of the disease, the burden of care, the need for new therapies, and our community’s willingness to take part in the advancement of drug development.

Your input matters.

Should you have other written comments you wish to have included in the report, please send them to svaeth@cfri.org.

PARTICIPATE NOW 

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).

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.