Cystic Fibrosis (CF) is a life-threatening disease that affects over 30,000 Americans. Great strides have been made in treatment, but there is still no cure. Life expectancy (with early diagnosis and proper treatment) has grown from a few years to to an average of 35 to 40 years in just the last 30+ years.
The salt air along the coast has been proven to help cystic fibrosis patients, and is why we chose the name Salt Air Jam. The goal of Salt Air Jam is to create and grow a foundation to assist in funding research and treatment for CF.
Proceeds from the first Salt Air Jam will be used to make a donation to the Cystic Fibrosis Foundation earmarking funds to be distributed the CF Center at MUSC, as well as funding the creation of the Salt Air Foundation. Salt Air Foundation will continue the Salt Air Jam and other events to benefit Cystic Fibrosis research and treatment.
In January 2013 the FDA approved the first (of it’s kind) drug to reverse the effects of CF in patients with a specific CF gene. This was a remarkable step that is hoped to lead to the same or similar treatments for patients with other CF genetics.
Eli Gilder was diagnosed with CF at birth and at the time of the inaugural Salt Air Jam is 5 years old. Eli is responding well to his CF treatment and awaits the opportunity to participate in upcoming clinical trials for new drug treatments related to his particular CF genetics. In the meantime he is doing a great job as our Salt Air Jam spokesperson!
UPDATE! (January 2017) Eli has been approved for a new drug that will ease some of his CF symptoms. He is now waiting for the administration and funding (estimated $220K + annually) process to occur.
UPDATE! (March 2017) Eli began taking Orkambi, a new drug for his specific genetic copy. The drug costs $20,000 per month and is currently being covered by SC Medicaid. Changes in healthcare programs that affect Medicaid could prevent Eli and other patients with badly needed assistance.
UPDATE! (April 2017) Salt Air Foundation has received IRS approval as a 501(c)3 non-profit organization. Operating as as Public Charity.,Salt Air Foundation has as it’s primary mission to assist CF patients and families caring for CF patients. If you would like to help us in our efforts please make a donation by using the form on this page.
We’ll keep you up to date on our progress here on SaltAirJam.com and at Salt Air Foundation
Here is an example of the needs CF patients face. This is for Eli Gilder 7 Years old:
Orkambi – $20321.55 (New CF drug that reverses CF at cellular level) not a cure
ZenPep – $2639.99 (Enzymes takes with every meal)
Qvar – $254.99 (Asthma/Allergy inhaler)
Ventolin – $71.99 (Asthm inhaler)
Miralax – $48.99 (Constipation)
Azithromycin – $71.99 (Antibiotic Bacteria in lungs forever)
Nexium – $497.99 (Acid Reflux)
Singulair – $132.99 (Asthma)
Pulmozyme – $3349.08 (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 everday.
(2) 30 minute nebulizer treatments with pulmozyme(salt air) daily
(2) 30 Airway Clearance treatments(Vest Therapy) RespirTech Airway Clearance System – $15000
He weighs 50lbs but must eat over 2000 calories daily(same as adult)