Friends & Families of Cystic Fibrosis is a nonprofit organization composed of volunteers dedicated to raising monies in support of children and adults affected with cystic fibrosis in West Michigan.
FFCF contributes to the special needs of families in the following ways:
- Care packages for children and young adults when hospitalized
- Assisting with medical supplies and/or equipment that is not covered by other resources
- Contributing to lung transplant procedures
- Assisting in funding medical equipment or needs of patients through the local CF Care Center at DeVos Children’s Hospital
- A determined individual special need
Cystic fibrosis is a life-threatening, genetic disorder. CF causes severe damage to the lungs and digestive system. There is currently no cure; however, with improved medication and treatment to manage symptoms, life expectancy has been extended considerably. As an organization, our goal is to help improve the quality of life for those suffering with cystic fibrosis and give them back a small piece of joy the disease has taken away.
Our group is not operated, nor funded by the Cystic Fibrosis Foundation.
Check out the Flyer Below for more info.
- Supplying and delivering care packages for children and young adults when hospitalized
- Funding flu shots for the CF Care Center
- Helping with rent, mortgage and utility payments
- Providing educational tools for CF children and adults
- Medical equipment not covered by insurance
- Gym memberships
- Funding towards funeral expenses
- Assorted items needed by CF adults
Friends and Families of Cystic Fibrosis is a vital member of our Adult CF team.
FFCF has decreased the burden of CF on so many of our adult patients.
They have paid for: equipment that insurance will not cover, running water to a
family whose well broke, gift cards, jogging strollers, utility bills, rent and much
more. Our adult patients are fortunate to have a community organization to
help those with an incurable disease.
– Bethany Doneth,
Adult Cystic Fibrosis Social Worker
FFCF is a phenomenal resource for our families and our CF clinic. FFCF has been able to help relieve the financial burden of CF for many of our families in need. They have helped families keep a roof over their heads, have reliable transportation, keep their utilities turned on, and make sure that they have good quality air in their home through mold treatment. Through their generous financial assistance, they have even helped families stay together by supporting parents in meeting the basic needs of their children. FFCF also has a tremendous emotional impact on our kids with CF through their care packages. Being admitted to the hospital for 2 – 4 weeks at a time is devastating to these kids, especially since they have to stay confined to their hospital room the entire time to protect them from picking up another infection. Care packages start providing hope and happiness from the moment that the child makes their wish list, to receiving the care package, and through the rest of the hospitalization as they get to use their presents to help keep busy while admitted. There really are no words to adequately describe how much of a blessing FFCF is to our families with CF and our CF Care Center!
– Jessica Bustraan,
LMSW Medical Social Worker
Our love for Friends & Families of Cystic Fibrosis is immeasurable. We couldn’t even pronounce “Cystic Fibrosis” when our daughter was born. When your first child is diagnosed with a devastating genetic lung disease your heart aches with pain that is yet to be known and your world completely falls apart. How can we possibly say thank you to all who are involved with FFCF and fully explain how they have managed to make us smile when we feel absolutely devastated and overwhelmed. FFCF has been there with love, comfort, and support when we needed it most and continue to inspire smiles in the darkest moments in the fight against this horrible disease.
– Liz Mullens,
From all of us, Thank You!
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
Cystic fibrosis is a hereditary chronic disease.
It is the second most common inherited disorder.
Cystic fibrosis causes the body to produce thick and sticky mucus.
It clogs the lungs and leads to life-threatening lung infections.
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
The predicted median age of survival for a person with CF is in the late 40s.
More than 45% of the CF patient population is age 18 or older.
If diagnosed at birth, a typical CF patient will have over 1,200 hours of
Physio Therapy(PT) by the age of 5, more if they get sick.