Below you’ll find some information that Caregiver Action Network (CAN) provided about themselves for the myasthenia gravis (MG) community.

When was Caregiver Action Network founded, and what’s the story behind it?

CAN was founded in 1993 as the National Family Caregivers Association by Suzanne Mintz and Cindy Fowler, with a focus on addressing the issues and concerns common to all family caregivers. The following year, we began promoting the celebration of family caregivers during the week of Thanksgiving. As interest grew in family caregiving issues, National Family Caregivers Week became National Family Caregivers Month, celebrated every November.

Some of our earliest accomplishments included increased awareness of family caregiving (measured by exponential growth in media coverage), the passage of the National Family Caregivers Support Program, acceptance of the term “family caregiver” by thought leaders and government recognition of family caregiving being a lifespan issue rather than one restricted to the aging community.

In 2013, our organization’s name was changed to Caregiver Action Network. Today, we continue our leadership role in caregiving by giving a voice to family caregivers and are the go-to organization for the media, the Patient-Centered Outcomes Research Institute, Congress, government agencies, service organizations and other organizations assisting family caregivers.

How many patient members does Caregiver Action Network have?

We serve more than 90 million family caregivers across the United States. CAN provides free support to family caregivers and does not charge a membership fee. As the nation’s leading “consumer-facing” nonprofit caregiving organization, CAN’s materials and messages reach millions of family caregivers. Family caregivers come to CAN for resources that help them learn to be better caregivers for their loved ones, as well as to take care of themselves.

Where does Caregiver Action Network operate?

Caregiver Action Network is a national organization located in Washington, D.C.

What resources does your advocacy organization provide to its members, and what can a new member expect when they join?

On our website, family caregivers can find community, share their story, read others’ stories, join a forum for peer support, stay informed about legislation affecting family caregivers and find additional resources. This program has touched the lives of thousands of family caregivers with rich, educational content and unwavering community support. Its messaging inspires confidence while easing the sense of isolation often felt so deeply by this community. Additionally, CAN teaches family caregivers the fundamental skills to navigate an increasingly complex and expansive healthcare environment.

How can people in the MG community get in touch with your advocacy organization’s leaders in their area so they can get involved?

They can contact the Caregiver Help Desk at 855-227-3640 or visit www.CaregiverAction.org.

How are your caregiver members involved with the organization?

Family caregivers come to Caregiver Action Network for help and resources, to learn to be better caregivers for their loved ones and to take care of themselves. They trust CAN as the leading national nonprofit in the caregiving landscape, knowing that our content and the information we recommend is reliable. We address issues and concerns common to family caregivers and have always found family caregiving to be a lifespan issue, encompassing those with chronic conditions, disabilities, disease or the frailties of old age.

CAN serves a broad spectrum of family caregivers, from families of children with special needs to families and friends of wounded soldiers; from a neighborhood’s support of a young couple dealing with multiple sclerosis (MS) to adult children caring for parents with Alzheimer’s disease. Family caregivers can chat anonymously on our website with other caregivers, read caregiver stories, post their own stories, watch videos of caregivers providing tips, search for resources and join our Caregivers-in-Action panel.

What are ways that people can contribute to your advocacy organization? Do you have any urgent needs?

People who wish to contribute can join CAN’s Caregivers-in-Action Insight Panel, a volunteer network of family caregiver advocates across the U.S. who represent and give voices to more than 90 million family caregivers in our country. The media and members of Congress often seek an opportunity to talk to family caregivers about their caregiving experience, and this panel can connect you with such opportunities so you can share your experiences.

How have the needs of Caregiver Action Network and its members changed over time?

CAN works to meet family caregivers where they are, and we’re always learning new ways to reach them. We listen to family caregivers in many ways so we can adjust our resources and avenues of support to meet their growing and changing needs. For example, the stress of providing care during the COVID-19 pandemic led to increased depression and anxiety in the caregiver community. They faced challenges working from home, providing care for school-aged children and being a caregiver—all in close quarters.

Caregivers faced increased financial burden due to the pandemic as well. Now, as many of us return to in-person workplaces, caregivers are once again adjusting their reality to be able to provide care to their loved ones in a new way. Caregiving takes a tremendous toll on the caregiver’s own health, physically, emotionally and financially. So, CAN aims to provide the increasing number of caregivers with practical help, support and information.

What is one thing that makes your advocacy organization stand out?

Every caregiving situation is unique, and we understand the value of one-on-one support. When you reach out to us at Caregiver Action Network, we want to make sure you get connected to the specific tools and resources that can help you and your loved one. Additionally, family caregivers can always access CAN’s resources free of charge.

Is there anything you wish more people knew about Caregiver Action Network?

CAN helps family caregivers develop the confidence and capabilities they need, empowering them to function as advocates for themselves and for their loved ones—and ultimately becoming effective members of their loved ones’ care teams.