Caregiver Support

We know that a Fanconi anemia (FA) diagnosis is earthshaking, and not just for those diagnosed, but also for caregivers. If you are a caregiver to someone with FA, we want you to know that you are not alone. We are here to help you navigate the FA journey by providing education and support that we hope will make this diagnosis more manageable.

“We realize that so many of the services, support, and appointments you spend your days on are aimed at the needs of your loved one. But we also see that you, dear caregiver, are living through and with the effects of this disease as well. We want you to have a space that’s dedicated to you and to the reality that is being a caregiver for a person with Fanconi anemia. This space is for you.”
Allison Breininger, wife and caregiver to husband Sean, who lives with FA

You probably never expected to take on the role of caregiver now or in this way, so it is with much love and gratitude for your integral role along this journey that we welcome you to the FAmily. We see you, we honor you, and we are here to support you.

Education and Support Services for Caregivers

FARF provides education and support to caregivers through a variety of programs and services.

Mug, cookie,  candle, journal, socks I'm Part of the Story caregiver box

Caregiver Boxes: I’m Part of the Story

We’ve teamed up with The Negative Space to celebrate and recognize your integral role along the FA journey. You are part of the FA story, but you also have your own story. We hope that the items in this box remind you that YOUR story matters! These boxes are ordered by FARF and shipped by The Negative Space to support newly diagnosed families or those going through major medical events. To notify FARF that a primary caregiver is currently supporting a loved one through a major medical event and could benefit from receiving a caregiver gift box, please contact Family Services Program Manager, Rosie Holcomb. Caregiver gift boxes are currently only available for shipping within the United States and are limited to one box per household. Thank you to Allison Breininger at The Negative Space, an FA caregiver herself, for designing these gifts and working alongside us in efforts to better support caregivers!

Coaching for Caregivers

At FARF, we see and honor caregivers and all that they do each day for the person in their life living with FA. We recognize that this role is hard and can feel lonely and overwhelming. Our partner, Allison Breininger, offers one-on-one peer coaching to caregivers who are looking for someone who has been in their shoes, and that can provide a safe place to talk along with practical support. FARF is pleased to offer a limited number of scholarships for FA caregivers interested in receiving coaching but for whom cost is prohibitive. Contact Allison for more information .(JavaScript must be enabled to view this email address).

Anticipatory Grief Resources

We often think of grief as something that only happens after a death, but it can also be felt in anticipation of a death or other kind of loss. In this community, grief begins at the time of diagnosis (or as soon as the possibility of death occurs in one’s mind), and it does not have a destination. It’s natural to grieve the future you thought you’d have with your loved one, the inevitable medical crises on the horizon, the physical and emotional pain that your loved one will endure, future financial strains, relationships that may suffer, as well as all future secondary losses that accompany a diagnosis like Fanconi anemia. This feeling of grief before impending loss is called anticipatory grief. Anticipatory grief includes a wide range of emotions, with grief responses that fall on a very broad spectrum; there really is no right or wrong way to grieve.

Have you experienced anticipatory grief? You’re not alone. Many, if not all, in the FA community share this experience. That’s why two members of our caregiving community, Allison Breininger and Rachel Altmann, have put together a list of resources for those experiencing anticipatory grief or grief from the loss of a loved one. No one should have to face grief alone. Click to view the resources.

If you are experiencing grief and would like help navigating resources, or to be connected to others in our community who have walked in your shoes, feel free to reach out to our family services team at 541-687-4658 x 301. We are here for you.

Ianacare App

Do you ever wish for an easy way to keep people updated or to ask for help when you need it? Do you want a way to connect with other caregivers? ianacare might be the perfect solution for you. IANA stands for I Am Note Alone. Their mission is to encourage, empower, and equip family caregivers with practical tools and supportive communities, so no caregiver does this alone. They have a free app, a podcast, and webinars as ways to support caregivers and provide practical resources. To learn more about how this app works, visit ianacare.com.

The Caregiver Spotlight

Partners, parents, siblings, grandparents, friends and family members, we want you to know how vital you are to this community. We want to make sure you have a space specifically for you, by you. We have a space in every print and online newsletter dedicated to caregivers. If you’d like to submit your story for the caregiver spotlight, please .(JavaScript must be enabled to view this email address).

FARF staff support

FARF Family Services staff are available for one-on-one support as needed or desired. While we do not offer traditional counseling or case management services, we do offer support by assisting with information gathering, referrals to FA specialists and community partners, directing folks to helpful resources, providing education, establishing connection among peers, and by providing a listening and empathetic ear.

Please know our Family Services team is here to support you. You can reach the Director, Jordan Deines at .(JavaScript must be enabled to view this email address) and the Program Manager, Rosie Holcomb at .(JavaScript must be enabled to view this email address).

FA Connect virtual caregiver support & education sessions

FARF is dedicated to providing online support and education throughout the entire year via our virtual FA Connect series. These free sessions are open to all caregivers and are a great opportunity to learn and to connect with other caregivers within the FA community. We’d love to see you there! Check out our events calendar to register for a variety of caregiver session topics.

In-person caregiver support and education sessions

Along with virtual sessions throughout the year, FARF provides two opportunities to meet in-person for support and education each year during the FA Family Meeting at Camp Sunshine and the FA Adult Retreat. While these meetings are also for individuals diagnosed with FA, FARF has committed to dedicating a variety of sessions specifically to caregivers.

FAmily Facebook support page

This group was created so that primary caregivers and legal guardians of children and adults affected by FA can ask questions, offer and receive support, and share Fanconi anemia-related experiences. This group was made private to maintain confidentiality and protect private information of those in the FA community. To join this group, contact .(JavaScript must be enabled to view this email address), Family Services Program Manager.

Peer-to-peer support

You are not alone. There are other caregivers in the FA community who would love to offer their support and walk beside you along this journey. If you feel like you might benefit from the one-on-one support of another caregiver, please .(JavaScript must be enabled to view this email address)! We are happy to connect you with someone in your area (if available) or with someone who has walked in similar shoes.

More Resources for Caregivers

Books

​Websites

​Podcasts

Articles & Stories