The Joey Fund Family Assistance Program

Cystic fibrosis can create financial challenges that extend far beyond medical care. A hospitalization can mean missed work. Frequent appointments can mean gas, parking, childcare, and meals away from home. Sometimes an unexpected expense can become a significant burden for a family already managing the demands of CF.

The Joey Fund provides need-based financial assistance to individuals and families affected by cystic fibrosis in Massachusetts, working closely with local CF care centers to identify where we can make the greatest difference.

Who We Help

To be considered for assistance, you must meet one or both of the following criteria:

  • Live in Massachusetts; and/or

  • Receive treatment at a Massachusetts CF Care Center.

What We Can Help With

Our Family Assistance Program is primarily intended to help with essential, everyday expenses and unexpected financial hardships related to living with cystic fibrosis.

Assistance may include:

  • Groceries and essential household needs

  • Gas and transportation

  • Parking related to CF care

  • Utilities

  • Rent or emergency housing needs

  • Temporary lodging or travel related to CF care

  • Other essential needs that may arise because of CF

Whenever possible, The Joey Fund works directly with CF care center social workers and pays vendors or service providers directly.

Special Circumstances

We also know that not every need fits neatly into a category.

The Joey Fund may consider assistance outside of the areas listed above when an individual or family is facing an extraordinary circumstance or significant unmet need. This might include urgent dental care, an essential car repair, or another unexpected expense that could meaningfully affect a family's health, stability, or ability to manage life with CF.

These requests are considered individually based on need, circumstances, available resources, and The Joey Fund's ability to help.

If you're not sure whether your situation qualifies, we encourage your care team to ask.

What We Generally Do Not Fund

The Joey Fund's Family Assistance Program is designed to complement, rather than replace, existing healthcare, insurance, and financial assistance programs.

For that reason, we generally do not provide assistance for:

  • Hospital or physician bills

  • Insurance premiums or deductibles

  • Prescription medications or copays

  • Existing medical or consumer debt

Extraordinary circumstances may be considered on a case-by-case basis.

How to Request Assistance

If you or a member of your family is living with cystic fibrosis and needs assistance, we encourage you to speak with your CF care center social worker or care team. They can help determine whether The Joey Fund may be an appropriate resource and submit a request on your behalf.

If you are not connected with a Massachusetts CF Care Center but meet our eligibility requirements, please contact us at TheJoeyFundCF@gmail.com.

Every request is considered thoughtfully and individually. Assistance is based on demonstrated need and available funding and is not guaranteed.

Need Help Navigating Other Resources?

For needs outside The Joey Fund's Family Assistance Program — including insurance questions, medication costs, copay assistance, disability benefits, legal resources, and other financial assistance programs — the Cystic Fibrosis Foundation's Compass program is an excellent resource.

Compass provides free, confidential, one-on-one assistance to people with CF and their families and can help identify other programs and resources that may be available.

Cystic Fibrosis Foundation - COMPASS PROGRAM

CF Foundation Compass is a personalized, one-on-one service that provides people living with cystic fibrosis and their families in all stages of their CF journey a partner in dealing with challenges related to life with CF, so they can focus on what is important to them.

Fully accredited from Inform USA (formerly AIRS) — the sole source of standards, accreditations, and certification for the community information and referral sector — Compass offers people in the CF community with premier quality and effective service while adhering to the best and latest industry practices.

Compass has helped thousands of people with CF and their families deal with all kinds of issues. If you are dealing with a problem, we've likely heard it before and can work with you to find solutions.

Our team of Inform USA-certified case managers strives to provide excellent service to anyone living with CF or their loved ones, regardless of income or insurance status, and the service we provide is completely free and confidential. We listen closely, explain thoroughly, and work through issues from start to finish.

We can:

  • Help you understand your insurance options by providing a side-by-side comparison of available plans during open enrollment or special enrollment periods so you can make a well-informed decision about your coverage

  • Look into what your insurance plan covers and how much visits, services, and medications will cost

  • Troubleshoot whatever insurance challenges you are facing

  • Refer you to financial assistance programs and resources that you may be eligible for to help with the cost of medications, treatment, and other living expenses

  • Get answers to legal questions about the laws that protect your rights as a person with CF, particularly in the areas of employment, education, and disability benefits

  • Plan for a transplant, such as verifying coverage for the procedure and treatments, looking for temporary lodging near a transplant center, and looking for transplant grants

  • Share other tools and resources, including the CF Resource Database — our self-guided search tool

While the Compass team can help you with many of life's challenges, there may be instances where we have to decline assistance for certain topics outside of our scope of services. For example:

  • We do not provide clinical information. The best source for this is your care team

  • We do not provide mental health counseling. We can, however, help you find counselors in your community

  • We do not give out money. We can connect you with organizations that may be able to provide financial or other assistance

  • We do not provide legal advice. We can refer you to resources that provide legal information or assistance

  • We do not recommend specific for-profit businesses, products, or services

  • If you are in need of assistance, but do not have cystic fibrosis, or are not caring for a person with cystic fibrosis, we may not be able to assist you

  • If you reside outside of the U.S., our expertise is focused on navigating the U.S. healthcare system and financial resources available to U.S. residents, so our scope of assistance to you may be limited

This list is not comprehensive. The best way to find out if Compass can help you is to connect with a Compass team member today. You can learn more about how case managers help thousands of people navigate challenges, find resources, and tackle life issues and Compass’s impact on the CF community here.

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