These external resources contain more information about cystic fibrosis.
Cystic Fibrosis Center Newsletter
Read the latest issue: Summer/Fall 2018
Cystic Fibrosis Foundation – Central New York Chapter
The Central New York Chapter, Syracuse Office of the Cystic Fibrosis Foundation welcomes you! Volunteers are the key to our success and the lifeblood of our organization. We have many opportunities for you to get involved. Your participation in any way will help us achieve our mission – finding a cure for all people with CF. Take a moment to check out our upcoming events and learn more.
Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation’s mission is to Add tomorrows and Life today. We are leading the way in advancing scientific discoveries in cystic fibrosis. We are dedicated to improving the daily lives of people with cystic fibrosis including help affording care, get the care you need, and stay healthy with CF.
Make-A-Wish Central New York
Make-A-Wish Central New York believes that a wish experience can be a game-changer. This one belief guides us in everything we do. It inspires us to grant wishes that change the lives of the kids we serve. Make-A-Wish serves 15 counties. Cystic Fibrosis is a qualifying diagnosis for Make-A-Wish.
CF Peer Connect
CF Peer Connect is a peer mentoring program that enables one-to-one connections between people with CF. It is a program for people with CF age 16 and older. Talk with and learn from someone who is also living with CF and has gone through similar experiences. Topics include: dating and relationships; going to college; making work/career decisions, including going on disability; having a family, parenting and infertility; getting diagnosed with CF as a teen or adult; living with CF-related diabetes; considering lung transplantation; managing post-transplant issues.
Partnerships for Sustaining Daily Care (PSDC)
As part of the Cystic Fibrosis Foundation’s mission to help improve the lives of people living with cystic fibrosis, the Partnerships for Sustaining Daily Care (PSDC) initiative taps the CF community to inform key efforts to support the management of daily care. This is a strategic commitment to develop a multi-pronged approach to help people with cystic fibrosis stick with their treatment plans.
Cystic Fibrosis Foundation COMPASS
Cystic Fibrosis Foundation COMPASS is a personalized service to help you with insurance, financial, legal and other issues you are facing. A dedicated, knowledgeable CF Foundation case manager is ready to work with you, one-on-one. COMPASS is available to anyone with CF, their family, and their care team, regardless of income or insurance status.
The HealthWell Foundation
The HealthWell Foundation provides financial assistance to eligible individuals to cover coinsurance, copayments, health care premiums and deductibles for certain medications and therapies. Our mission is to reduce financial barriers to care for underinsured patients with chronic or life-threatening diseases.
CNY Families Fighting CF
The Pediatric Pulmonary and Cystic Fibrosis Clinic have a closed FaceBook support group called CNY Families Fighting CF. To be added to this group, please connect with Jamie Cary or Kim Garver when you are at Clinic as this is a closed group and requires a consent form among other steps to join this group.
The Kid's Health website put out by Nemours offers parents knowledge, advice and comfort, kids homework help and education about how the body works, and offers teens answers, advice and straight talk. There is also information specifically for educators.
UnitedHealthcare Children’s Foundation
UnitedHealthcare Children’s Foundation allows eligible families with private insurance to apply for grants up to $10,000 in medical expenses. These grants require a lot of work from families and the application can be intimidating, but families with patients with cystic fibrosis do get these financial grants to assist with medical expenses.