It has been our goal since the first Salt Air™ Jam in 2015 to establish a foundation to expand our efforts to create awareness and assist patients living with Cystic Fibrosis (CF). We finally achieved the first step of that goal last week. Our 501(c)3 non- profit corporation has been established as Salt Air™ Foundation. Salt Air™ Foundation will conduct fundraising events such as Salt Air™ Jam and Salt Air™ Scramble with patient assistance and research as the main focus. Having first-hand knowledge of the financial challenges facing CF patients and families caring for CF patients created the urgency to pursue this organizational step. The costs for care are so staggering, normal families struggle to maintain the care and their home….even when they have insurance. Below is an example of the monthly costs CF patients face. These costs are actual records for my grandson who is 7 years old:
Orkambi – $20,321.55 (New CF drug that reverses CF at cellular level)- not a cure
ZenPep – $2,639.99 (Enzymes takes with every meal)
Qvar – $254.99 (Asthma/Allergy inhaler)
Ventolin – $71.99 (Asthma inhaler)
Miralax – $48.99 (Constipation)
Azithromycin – $71.99 (Antibiotic- Bacteria in lungs forever)
Nexium – $497.99 (Acid Reflux)
Singulair – $132.99 (Asthma)
Pulmozyme – $3,349.08 (Salt Air)
Flonase – $41.50 ( Allergies)
Allegra – $27.39 (Allergies)
Multivitamin – $31.86
Pediasure – $150
TOTAL – $27,640.31 per month
He takes around 35 pills everyday.
(2) 30 minute nebulizer treatments with pulmozyme(salt air) daily
(2) 30 minute Airway Clearance treatments(Vest Therapy) RespirTech Airway Clearance System – $15,000
He weighs 50lbs but must eat over 2000 calories daily(same as adult)
There are approximately 30,000 people living with CF in the United States. Although monthly expenses vary…some less, but many more are much higher, the monthly estimated expense nears 1 Billion dollars. Someone has to cover those costs….whether through insurance companies, medicaid, philanthropy, or family income or a combination of some or all.
It is our goal to initially focus on assisting patients in the Carolinas. We know the needs far exceed our initial capabilities, and that’s going to be very frustrating. So, we’re looking for individuals and companies that would consider our foundation as their philanthropic endeavor. CF is still considered terminal yet the state of South Carolina does not consider it a disability. Coverage and proper care for CF patients is an urgent matter and and extreme challenge. But, we can make a difference with your help.