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Salt Air Jam For Cystic Fibrosis

$575 of $10k goal

Raised by 7 people in 11 days
Salt Air Jam is a music festival / fundraiser to raise money to offset medical expenses for people living with Cystic Fibrosis (CF). 
Donations will help expenses for the event where 100% of all dollars raised (over and above costs) will go into the charity fund. 
We are targeting Cysitic Fibrosis patients in the Carolinas.
Event proceeds will be used  for patient assistance and research.
Funds are needed immediatey to meet  our May 19th Salt Air Jam and May 20th Salt Air Scramble goals.
We're almost across the finish line with our 501 C 3 Non -profit Salt Air Foundation.  We also send monies to Cystic Fibrosis Foundation.
Here is and example of costs and challenges for a CF patients...My 7 year old grandson, Eli:
Meds:
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
RespirTech Airway Clearance System - $15000

Eli takes around 35 pills everday.
(2) 30 minute nebulizer treatments with pulmozyme(salt air) daily
(2) 30 Airway Clearance treatments(Vest Therapy)
He weighs 50lbs but must eat over 2000 calories daily(same as adult)
+ Read More
Update 1
Posted by Jeff Gilder
9 days ago
   Share
Here is an example of patient needs. This is a normal month for my grandson, Eli.
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)
+ Read More
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$575 of $10k goal

Raised by 7 people in 11 days
Created April 12, 2017
$50
Anonymous
4 days ago
GT
$25
Gary Taylor
7 days ago
TH
$100
Terese Harbaugh
7 days ago
DH
$100
Don Helmig
8 days ago

This is a noble endeavor

BA
$100
Brian Adams
8 days ago
DA
$100
Devin Alexander
10 days ago
$100
Anonymous
11 days ago
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