MILES FOR CYSTIC FIBROSIS INC
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Mission Statement
BreatheStrong CF (formerly Miles for CF) advances the physical and mental wellness of the cystic fibrosis (CF) community through education, direct support, and empowering opportunities.
About This Cause
We are excited to announce that Miles for Cystic Fibrosis and the Cystic Fibrosis Lifestyle Foundation have become BreatheStrong CF, an organization dedicated to supporting the active lifestyles and overall wellness of individuals with CF. We believe that our new name, BreatheStrong CF, represents hope and resilience and aligns with the core values of each organization – dedicated to empowering active lifestyles and providing health and wellness education for those with CF. It builds on the familiar name of our BreatheStrong exercise grant program and our BreatheStrong+ virtual wellness program. We continue to impact the lives of people with CF every day by providing direct assistance for exercise and sports activities, classes, equipment, and other critical needs. We invite you to explore our website and join us in transforming lives through our impactful programs and activities. Cystic Fibrosis (CF) is the most common fatal genetic (inherited) disease, impacting nearly 40,000 in the United States. Treatment includes medication, antibiotics, breathing treatments, frequent doctor appointments, and, in severe cases, live organ transplantation (lungs, kidneys, liver). Once considered the leading genetic killer in the US, now over half of the population are adults. However, living with and surviving CF places immense financial strain on patients and families. New treatments are increasing life expectancy for those with CF, but the disease itself is expensive to treat. Costly medications, high deductibles, and copays wreak havoc on family budgets. Due to the demands of the illness, many in the CF community incur lost wages for appointments and hospitalizations. Many in the CF community experience limited employment and education opportunities as well. A survey conducted in 2019 found that 75% of people with CF experienced a financial burden, 50% reported excessive debt, and nearly 40% were on social security disability. 30% are food insecure, which is three times the national average. CF individuals and families often face difficult financial decisions, forcing them to prioritize housing, food, and medicine. Poverty in CF is ubiquitous and leads to poorer outcomes and higher mortality. A study showed that people with CF in lower-income households had nearly a 50% higher risk of complications, faster health decline, and shorter lifespan. The Cystic Fibrosis Foundation (CFF) promotes exercise as part of the CF treatment plan at its 130+ accredited centers. For people with CF (PwCF), exercise can improve lung function, promote mucus clearance, improve mood, reduce stress, depression, and anxiety, help manage diabetes, improve heart and bone disease—all issues that significantly impact those with CF--and ultimately increase patient longevity. PwCF are interested in exercise as therapy, especially since research indicates that exercise can replace airway clearance therapy because it promotes the removal of mucosal cilia. Exercise helps normalize the lives of CF patients by replacing the solitude of in-home airway clearance methods (being attached to machines). CF has shifted from failure to thrive (underweight) to nearly 40% of the community being overweight or obese. Exercise Grants provide financial support to reduce the financial barriers those living with CF often encounter, hindering their opportunity to participate in the activity of their choice. We work with CF Specialty clinics to ensure those in need can participate in the same activities as their healthy peers regardless of financial status. Those applying for grants may request support (up to $750 annually) for bicycles, trampolines, gym memberships, sports league fees, lessons, etc. Grants are paid directly to the vendor or program. Applicants are encouraged to reapply each year. In 2023, we approved 395 grants to 39 states, and our recipients ranged in age from 6 months to 73! We saw 50% in requests in 2023. We have been providing exercise grants for 20 years. No other nonprofit in the US offers this type of support. In 2023, we launched BreatheStrong+, an innovative program to help further the impact of its exercise grant program. BreatheStrong+ is a free virtual wellness program. The program was developed to educate, motivate, and incentivize efforts toward participating in healthy habits. At the same time, BreatheStrong+ encourages building a virtual community among people who cannot safely be physically together. While Miles for CF’s exercise grant program alleviates the financial burden of participating in activities, sports, and fitness programs, BreatheStrong+ is our commitment to supporting healthy habits year-round. We created the Critical Needs Initiative (CNI) in response to the Georgian CF community's financial hardship during the Covid-19 pandemic. It was quickly apparent that the need in the CF community transcended the pandemic, and CNI became a permanent outreach program. In 2021, we honored and memorialized our good friend and CF fighter Susan, who lost her battle with CF, by rebranding the program as the Susan C. Burrough Critical Needs Initiative. We know there is a need for this type of program in every state, and our goal is to use our infrastructure to expand this program nationally. CNI assists those experiencing temporary financial shortages and unable to meet their basic needs. BreatheStrong CF works closely with CF medical care providers and social workers who refer patients who have exhausted all other resources and need relief. CNI assists with food for healthy diets, gas cards to enable trips to medical appointments, and utility payments for electricity to run medical equipment and/or internet service for telehealth appointments. Assistance is limited to 3 instances per PwCF per year. We provide equal access to participate in the M4CF organization and our programs, events, and activities regardless of gender, race, ethnicity, religion, national origin, age, sexual orientation or identity, education, or disability. One of our core principles is inclusion. BreatheStrong CF feels strongly about serving the cystic fibrosis community, and to do so effectively, we actively engage those living with CF in our organization. I am proud to share that more than 50% of our employees and two of our Board members live with CF. We engage parents and caregivers of those living with CF and network with other CF-related non-profits. This inclusion enables BreatheStrong CF to design and implement meaningful and impactful programs for those living with CF. One of our core principles is inclusion. BreatheStrong CF feels strongly about serving the cystic fibrosis community, and to do so effectively, we actively engage those living with CF in our organization. More than 50% of our employees and two Board members live with CF. We engage parents and caregivers of those living with CF and network with other CF-related non-profits. This inclusion enables M4CF to design and implement meaningful and impactful programs for those living with CF. We provide equal access to participate in the BreatheStrong CF organization and our programs, events, and activities regardless of gender, race, ethnicity, religion, national origin, age, sexual orientation or identity, education, or disability.