May 2020
Cystic Fibrosis Online Bereavement Support Group
Starting Tuesday, May 19, 2020,5:30 pm PST
This structured eight-week online group for those who have lost a loved one to cystic fibrosis will be led by Isabel Stenzel Byrnes, LCSW, MPH, bereavement social worker at Mission Hospice who has lived with cystic fibrosis for 48 years. Sessions will be held weekly on Tuesdays, beginning May 19 through July 7, 5:30 pm – 7:00 pm PT / 8:30 pm – 10:00 pm ET.
Registration is free, and limited to 12 participants.
Topics will include sharing and discussion, journaling/ writing, goal setting, grief education, self-care strategies, and focus on one’s emerging self.
Made possible through grants from Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech.
Support Group for COVID-19-Related Stress and Anxiety
Thursday, May 28, 2020, 5:00 pm PST / 8:00 pm EST 
Moderated by Yelizaveta Sher, MD, psychiatrist at the Adult CF Center at Stanford.
CFRI will host a weekly online discussion/support group for members of the CF community. This is an open format via Zoom where people can share their experiences and address the anxiety that COVID-19 is triggering in our community.
To participate, please send an email to CFRI to request the registration link. Please allow 3-4 hours before the meeting to register.
Live & Love Yoga for CF Awareness
Sunday, May 31, 2020, 10:00 am PST / 1:00 pm EST 
Join us for an online Live & Love Yoga Workshop to bring us together in mindfulness, breath, and movement to honor CF awareness month, and our shared community. The workshop – led by Stacie Reveles, CFRI staff member, certified yoga teacher, and mother of a teenager with CF – will take place on Sunday, May 31st from 10:00 am -11:00 am PST (1:00 – 2:00 pm EST).
Registration is free, but donations are welcomed.
Feel free to invite others! No special equipment needed, and every level is welcome.
Purple Hair Challenge!
May is Cystic Fibrosis Awareness Month!
To raise awareness of CF and support for CFRI, we are launching a fun “Purple Hair Challenge.” This is similar to the Ice Bucket Challenge, but instead of pouring ice water over your head, you only need to dye your hair purple! This can be with temporary or permanent dye, and include all or strands of it. You then take a picture of yourself, post it on your social media network with the hashtag #purplehairchallenge, make a donation to CFRI, tag CFRI and challenge others by tagging them and sharing this link:
https://cfri.org/purple-hair-challenge/
Are you up for the challenge? Email Stacie Reveles at sreveles@cfri.org with any questions.
June 2020
Online Support Group for Adults with CF
Monday, June 22, 2020
CFRI provides a monthly Online Support Group for Adults with CF, which
is open to participants nationwide. The group is facilitated by a social worker well versed in issues facing adults with CF.
The group meets on the third Monday of every month, from 6:00 pm PST to 7:30 pm (9:00 pm – 10:30 pm EST).
To participate, please send an email to CFRI to request the registration link. Please allow 3-4 hours before the meeting to register.
Facilitated by Meg Dvorak, LCSW, or Kate Yablonsky, LCSW, CF Social Workers at Stanford.
CF Caregivers Support Groups
Tuesday, June 23, 2020
CFRI provides a monthly CF Caregivers Support Group, which is open to 
participants nationwide. The groups are facilitated by a social worker well versed in issues facing CF caregivers. Participants are able to participate in person, as well as join anywhere from the country by telephone.
Two groups to choose from:
- Parents of children with CF:
5:00 pm – 6:00 pm PST - Parents/Spouses/Partners of Adults with CF:
6:00 pm – 7:00 pm PST
To Attend in Person:
730 Welch Rd, Palo Alto, CA; 1st Floor Conference Room (both sessions)
To participate, please send an email to CFRI to request the registration link. Please allow 3-4 hours before the meeting to register.
Facilitated by Meg Dvorak, LCSW, or Kate Yablonsky, LCSW, CF Social Workers at Stanford
Caregivers Support Groups are made possible through grants from Vertex Pharmaceuticals, Chiesi USA, Horizon Therapeutics, Irene Pappas, and a Bequest in Memory of Peter and Kathy Judge.
July 2020
Online Support Group for Adults with CF
Monday, July 20, 2020
CFRI provides a monthly Online Support Group for Adults with CF, 
which is open to participants nationwide. The group is facilitated by a social worker well versed in issues facing adults with CF.
The group meets on the third Monday of every month, from 6:00 pm PST to 7:30 pm (9:00 pm – 10:30 pm EST).
To participate, please send an email to CFRI to request the registration link. Please allow 3-4 hours before the meeting to register.
Facilitated by Meg Dvorak, LCSW, or Kate Yablonsky, LCSW, CF Social Workers at Stanford.
CF Caregivers Support Groups
Tuesday, July 21, 2020
CFRI provides a monthly CF Caregivers Support Group, which is open to participants nationwide. The groups are facilitated by a social worker well versed in issues facing CF caregivers. Participants are able to participate in person, as well as join anywhere from the country by telephone.
Two groups to choose from:
- Parents of children with CF:
5:00 pm – 6:00 pm PST - Parents/Spouses/Partners of Adults with CF:
6:00 pm – 7:00 pm PST
To Attend in Person:
730 Welch Rd, Palo Alto, CA; 1st Floor Conference Room (both sessions)
To participate, please send an email to CFRI to request the registration link. Please allow 3-4 hours before the meeting to register.
Facilitated by Meg Dvorak, LCSW, or Kate Yablonsky, LCSW, CF Social Workers at Stanford
Caregivers Support Groups are made possible through grants from Vertex Pharmaceuticals, Chiesi USA, Horizon Therapeutics, Irene Pappas, and a Bequest in Memory of Peter and Kathy Judge.
CF Summer Retreat
Due to the COVID-19 pandemic, please stay tuned for updates regarding a Virtual Retreat.
Saturday, July 25, 2020 – Friday, July 31, 2020
The CF Summer Retreat provides a safe and welcoming environment, created to enhance education, positive coping skills, and social support for people who share common experiences with CF. Evaluations from previous Retreat attendees show that it successfully provided new information about CF therapies and treatments, improved psychosocial health, and provided resources and strategies for coping with the daily challenges of CF. The retreat is filled with various activities such as:
- Daily exercise activities tailored to individuals’ unique capacities;
- Educational workshops with guest speakers, addressing such issues as transplant, gastrointestinal issues and CF, hemoptysis, nutrition, and CF sinus disease;
- Daily rap sessions (support groups) to support positive mental health;
- Special events and dedicated time to connect, network, and socialize with others.
Eligibility:
- Adults 18 years and older with cystic fibrosis, their family members, and friends are welcome
- All participants must adhere to CFRI’s Cross Infection Control Policy
August 2020
CFRI’s 33rd National CF Education 
Conference: Partners in Progress ~ An Exciting Virtual Experience
Saturday, August 1 – Sunday, August 2, 2020
Our 2020 annual conference will be presented in an exciting and engaging virtual format, offering outstanding speakers, support groups, and activities, as well as the opportunity to connect with your CF community from across the country and globe.
Registration is free!
The first 100 registrants will receive a complimentary hardcover copy of “Salt in My Soul” by Mallory Smith!
Confirmed speakers and topics include:
- James Chmiel, MD – Anti-Inflammatory Therapies
- Doug Conrad, MD – CF and Phage Therapy
- Julie Desch, MD – Learning, Laughing and Loving with CF
- Marie Egan, MD – CF Pipeline
- Denis Hadjiliadis, MD – Cancer and CF
- Nicole Irizarry, DPT – Exercise and CF
- Rick Moss, MD – COVID-19 Update
- Virginia O’Hayer, PhD – Acceptance and Committment Therapy (ACT)
- Caroline Okorie, MD – Sleep and CF
- Diane Shader Smith – Salt in My Soul
- Yelizaveta Sher, MD – Psychiatry’s Role in CF Treatment
- Sriram Vaidyanathan, PhD – CF and CRISPR
- CF and the Siblings: Panel Discussion
In addition, 7 CFRI-funded researchers will present their work:
- Ana Georgina Cobián Güemes, PhD
- Martina Gentzsch, PhD
- Lucas Hoffman, MD, PhD
- Elizabeth Kramer, MD, PhD
- Keehoon Lee, PhD
- Kenichi Okuda, MD, PhD
- Forest Rohwer, PhD
For information or to register for these events, please email cfri@cfri.org or call 650.665.7576.