Events

 

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CF Caregivers Support Groups

Third Tuesday of Every Month
Feb 19 •  Mar 19 • Apr 16

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.

 

January 2019

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Knowledge in Motion

6-Week Interactive Online Class Beginning Tuesday, January 8, 2019, as well as Tuesday, February 19, 2019, 6:15 pm – 7:15 pm PST

You can sign up for one or both sessions.

This class will help you understand what type of exercise fits best for you, and help you put together the program that best suits your needs and goals. Whether you want to increase your cardiovascular endurance, improve your strength, or are just looking for other exercises to throw into your workout routine, this class has something for everyone. You will have access to a library of online exercise videos and live Q&A’s, and at the end of the 6-week sessions each individual will have access to the Pulmonary Performance Institute’s online exercise app that will allow you to stream exercise workouts and scroll through exercise content that is specially geared to those with CF.

CFRI’s “Knowledge in Motion” is an online interactive class taught by Taylor Lewis, MA (Kinesiology), (Cystic Fibrosis Fitness Institute).

The class is free to individuals with CF, as well as parents, spouses, partners and siblings of those with CF.

 SESSION 1   Class in process – registration closed.

 SESSION 2   Sign up for session 2 starting February 19, 2019!

 

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POUND CF

CFRI’s Interactive Six-Week Online POUND Class Begins Thursday, January 17, 2019 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.

CFRI’s online POUND class will be taught by Amy Rad, MA (Kinesiology), a certified exercise physiologist and certified Pound instructor.

The class is free to individuals with CF, as well as parents, spouses, partners, and siblings of those with CF.

To watch a brief video about POUND, go to: http://tiny.cc/t8o3ty.

REGISTRATION CLOSED  Class in process – registration closed.

 

February 2019

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Physical Therapy for CF Health

5-Week Interactive Online Class Beginning Saturday, February 2, 2019, 11:00 am – 12:15 pm PST

Physical Therapists are invaluable members of the CF care team. This class will help those with CF to address some of the more common health issues that may not always be addressed in clinic.

CFRI’s “Physical Therapy for CF Health” is an online class taught by Physical Therapists Nicole Irizarry, DPT (Optimize PT), and Karen von Berg, DPT (CF Center, Johns Hopkins Medical Center).

The class is free to individuals with CF, as well as parents, spouses, partners, and siblings of those with CF.

Topics include endurance, strength and flexibility, and managing posture, chronic pain and urinary incontinence.

SIGN UP HERE  

March 2019

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Yoga for CF Health & Wellbeing

Interactive Six-­Week Online Yoga Class Begins Saturday, March 16, 2019, 11:00 am – 12:15 pm PST

CFRI’s “Yoga for CF Health” is an online interactive class taught by Martha Modawell, Certified Yoga Instructor and mother of two children with CF.

The 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 NOW   

 

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Día de la Educación Familiar en Español

Sabado, 30 de marzo 2019, 10:00 am – 2:30 pm

Hospital de Niños Benioff de la UCSF
Campus de Mission Bay

¿Le gustaría conocer a otras familias que hablan español y aprender sobre la fibrosis quística (FQ) en su propio idioma? La UC San Francisco (UCSF) se complace en anunciar una oportunidad especial para la comunidad de habla hispana. En asociación con CFRI (Cystic Fibrosis Research, Inc.), organizarán un Día de la educación sobre FQ que se realizará principalmente en español.

Quienes asistan se reunirán con otras familias y escucharán a una variedad de expertos sobre nuevos tratamientos para la FQ, cómo mantener el bienestar emocional mientras viven con una enfermedad crónica y recursos para apoyo financiero, legal y emocional. Además, un abogado de inmigración también impartirá un taller sobre opciones de inmigración para familias y actualizaciones sobre la política de inmigración.

Debido a las precauciones necesarias para evitar infecciones, las personas con FQ no pueden asistir al evento en persona. Por favor considere este aspecto al planear dejar a niños al cuidado de alguien. Los padres y otros miembros de la familia que viven en el área son bienvenidos a asistir al evento en persona, mientras que los miembros de la comunidad con FQ y que hablan español de todo el país pueden ver el evento en vivo desde su teléfono o computadora.

No es necesario que su hijo/a sea paciente de la UCSF para asistir a este evento. Todos son bienvenidos a asistir.

¡regístrese ahora!  

Si tiene preguntas, puede comunicarse con la trabajadora social de la UCSF, Tiffany Raffino, al (415) 476-2890. Tiffany habla español y estará feliz de responder sus preguntas.

Este evento es posible gracias a una subvención del Círculo de Atención (Circle of Care grant) de Vertex Pharmaceuticals.

 

April 2019

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Living Mindfully with CF 

Interactive Six-­Week Online Class Begins Tuesday, April 23, 2019, 6:15 pm – 7:30 pm PST

CFRI’s online ‘Living Mindfully with CF’ class – created and taught by Julie Desch, MD, who herself has cystic fibrosis (CF) – draws upon Mindfulness-Based Stress Reduction techniques and focuses these practices specifically to living with CF.

Features

  • Open to individuals with CF and their family members (spouses/partners, parents, siblings) from across the United States and beyond
  • Participants must be at least 16 years old
  • Classes include a 10-15 minute movement practice, 20 minute guided meditation, small group breakout period, a 20 minute talk, as well as time for questions and answers
  • The class is online, and is interactive
  • Participants can meet each other, see each other, talk, and learn from each other 

Topics covered

  • Class One (April 23) – What is Mindfulness : Introduction to Body Scan.
  • Class Two (April 30) – Mindfulness of Body and Breath : Introduction to gentle seated movement practice
  • Class Three (May 7) – Mindfulness of Thinking : Introduction to gentle standing movement practice
  • Class Four (May 14) – Mindfulness of Emotion : Introduction to walking meditation
  • Class Five (May 21) – Working with Uncertainty : Introduction to Qigong practice
  • Class Six (May 28) – Self-Compassion and Resilience

SIGN UP NOW   

 

May 2019

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Embrace: A Weekend Retreat for Mothers of Children & Adults with CF

Friday, May 3 – Sunday, May 5, 2019

Vallombrosa Retreat Center, Menlo Park, CA

CFRI hosts this annual retreat for mothers of children & adults diagnosed with cystic fibrosis, in recognition of the vital role that mothers have in the care of their loved ones. Art workshops, yoga, journaling, CF resources, support group, music, and respite time with women who share the CF path; are part of this weekend that offers an opportunity for all to connect and rejuvenate over a weekend.

Registration fee

  • $150: Includes two nights in a single occupancy room at Vallombrosa, meals, workshops, & retreat events (limited to 23 rooms)
  • $75: includes meals, workshops & retreat events (no overnight stay)

 SIGN UP NOW!   

“This retreat was life changing! It is so wonderful to be with other women who understand the challenges we face raising our children with CF.”  Mother of an adult daughter with CF

Embrace Retreat is made possible through grants from AbbVie and Gilead Sciences.

July 2019

 

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2019 CF Summer Retreat

Saturday, July 20 – Friday, July 26, 2019

Vallombrosa Retreat Center, Menlo Park CA

The 2019 CF Summer Retreat provides a safe and welcoming environment, created to enhance positive coping skills, social support and education for people who share common experiences with CF.

The retreat is filled with various activities such as :

  • Daily exercise, arts and crafts, rap sessions (support groups), and educational workshops with guest speakers, all of which promote physical and positive mental health
  • A talent show, games, and dedicated time to connect, network and socialize with others, to make the getaway fulfilling and enjoyable for all

Eligibility

STAY TUNED!

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CFRI’s 32nd National CF Education Conference: Charting the CF Course

July 26 -28, 2019 (Fri – Sun)

Pullman San Francisco Bay Hotel
Redwood City, CA

This weekend conference brings together those impacted by cystic fibrosis (CF) – including patients and families – with CF scientists, clinicians and experts in the field of CF from across the United States.

Conference features

  • Updates on new therapies and vital CF-related topics addressed by nationally renowned presenters
  • Access to pharmaceutical and medical technology representatives
  • Support Groups and Workshops
  • Receptions, awards & networking with CF community peers

For more information, click here.

REGISTER NOW 

Please note : Participants/guests are requested to use proper hygiene to ensure good health for all participants with CF must adhere to CFRI’s Infection Control Guidelines

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