In light of the high rates of depression and anxiety that are common among those impacted by cystic fibrosis (CF), CFRI offers financial support for counseling sessions as well as monthly caregiver support groups. CFRI also offers “Living Mindfully with CF,” an online class which draws upon Mindfulness-Based Stress Reduction techniques. These programs address the impact of chronic illness on emotional health. Participation in these programs helps improve health and quality of life, and is open to the CF community nationwide.
Counseling Support to Nationwide CF Community
Children and adults with CF as well as their family members (parents, siblings, spouses/partners) are eligible to receive financial support for six individual therapy sessions per year with a licensed provider of their choice. CFRI will cover the cost of your insurance co-pay for six sessions, or pay up to $120 per session for six sessions if you have no insurance, or your provider does not accept insurance or is outside of your network. CFRI will pay the provider directly. Participants must live in the United States. You can select a licensed therapist in your community (for a referral, you can ask your CF social worker).
This program has limited funds and operates on a “first come first serve” basis. Due to high demand, the program often runs out of funding in the second half of the year. To ensure that your sessions are covered, please follow our program procedures as outlined below:
- Check in with us: BEFORE sending us any invoices, contracts, or other documents, please contact Sabine Brants (sbrants@cfri.org, 650-665-7576) to check if there is funding available for your sessions.
- Receive forms from CFRI: If we have funding available, we will send the required paperwork to you as well as your chosen provider. This paperwork needs to be completed BEFORE starting CFRI-supported sessions.
- Submit paperwork to CFRI in a timely manner: We ask that the documents are submitted as soon as possible so we know that you really want to pursue counseling. If you wait for 6 months before submitting your paperwork, the program may have run out of funds in the meantime and we won’t be able to offer you financial support.
- Wait for sessions to be approved: Once we receive the completed paperwork from you and the provider, we will let you know that you are approved to start your six CFRI-supported sessions. We will not accept invoices that are submitted without prior approval.
- Start sessions after approval: Once CFRI approves your sessions, we hold money in our program budget for you. We ask that all six sessions are completed within 18 weeks so we know that you are actually using the money we hold for you. Please notify us immediately if you discontinue therapy for whatever reason so the money can be released and used to support other people with CF and their families.
- Submit assessments and invoices: By participating in the program, you commit to take part in the brief evaluation process. At the first and last of the CFRI-supported sessions, the therapist will ask you to complete two short questionnaires, and submit them to CFRI along with the first and last invoice.
For more information on how to participate in CFRI’s Counseling Support Program, please email Sabine Brants (sbrants@cfri.org.)
This program is made possible through grants from Chiesi USA, Genentech, Ionis, Viatris, Translate Bio, Gilead Sciences, and private donors.
Caregivers Support Groups: Third Tuesday of Every Month
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). Please note: Due to the COVID-19 pandemic, in-person support group meetings have been suspended until further notice.
To Participate by Phone or Video Conference:
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 sponsored by Chiesi USA, Genentech, Ionis, Viatris, Translate Bio, Gilead Sciences, and private donors.
Online Support Group for Adults with CF: Third Monday of Every Month
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
Online Support Groups for Adults with CF are sponsored by Chiesi USA, Genentech, Ionis, Viatris, Translate Bio, Gilead Sciences, and private donors.
Mindfulness 2.0
8-week class starting Tuesday, April 13, 2021, 4:15 pm PT (7:15 pm ET)
CFRI’s online class “Mindfulness 2.0,” taught by Julie Desch, MD, who herself has cystic fibrosis (CF), will share a new approach to bringing mindfulness into your daily life. It is based on Unified Mindfulness and has been adapted for the CF community. This new series is designed both for those who have taken her classes before and for those completely new to meditation.
Features
- Class is 8 weeks long (8 sessions on Tuesdays from 4:15 pm to 5:30 pm PT)
- 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
- The class is online and interactive – participants can see each other, talk, and learn from each other
Topics covered
- Class One – Introduction to Unified Mindfulness
- Class Two – How to Relax and Recharge with Mindfulness
- Class Three – Mindfulness in Daily Life
- Class Four – Getting in the Zone & Going with the Flow
- Class Five – It’s Fun to Be Spontaneous
- Class Six – Feeling Good and the Magic of Music
- Class Seven – Applying Mindfulness to Inner Opportunities and Obstacles
- Class Eight – Wrap Up – Your Unified Mindfulness Road Map
REGISTRATION CLOSED Stay tuned for upcoming classes!
Mindfulness 2.0 sponsored by Chiesi USA, Genentech, Ionis, Viatris, Translate Bio, Gilead Sciences, and private donors.
Cystic Fibrosis Online Bereavement Support Group
A structured eight-week online group for those who have lost a loved one to cystic fibrosis.
Starting Tuesday, October 27, 5:30 pm PT (8:30 pm ET)
Led by Isabel Stenzel Byrnes, LCSW, MPH
Classes will be held on Tuesdays from 5:30 pm – 7:00 pm PT (8:30 pm – 10:00 pm ET). No class on November 3.
Grief can be isolating, and loss to cystic fibrosis can be even more lonely. This grief support group aims to allow those in the CF community to come together to share their stories of love and care, to talk about the hardest parts of loss and to explore new ways of being without your CF loved one. Learn to cope with grief and grow as a person in this chapter of your life.
Registration is free, and the class is limited to 12 participants.
Topics include:
– Sharing and Discussion
– Journaling/Writing
– Goal Setting
– Grief Education
– Self-Care Strategies
– Focus on One’s Emerging Self
REGISTRATION CLOSED Stay tuned for upcoming sessions.