Help kids with cystic fibrosis

This is a happy story - please read
This is Scarlett Rose. She was born with cystic fibrosis which is a life shortening genetic condition that leads to thick mucus in the lungs and other organs, scarring and ongoing infections that require extremely strong antibiotics to survive into young adulthood.  Many kids with cystic fibrosis still don't make it despite modern medicine.

 Scarlett was no different to other kids with cf.  At 6 weeks of age she was at 0 percentile - meaning she weighed less than almost all healthy girls her age. This was because her pancreas was damaged from the inside by the disease.  At 3 months of age she contracted a cf lung infection called pseudomonas aeruginosa due to the thick sticky mucus in her lungs.  Six months of strong antibiotics did not clear the infection.

There w ere drugs available that are super expensive ($300,000 per year) but often only slow the disease progress, and they are not suitable for all types of cf. 

However all was not lost. Scarlett has had a complete reversal of her symptoms due to  special supplements that have been created to supply nutrients that are low or missing in the lungs and other organs of kids with cystic fibrosis.

Since starting these supplements she  has become healthier, heavier and taller than many girls her age, and does not require hospital visits, regular antibiotics or other treatments. She no longer has any thick sticky mucus or cough, no infections or other cf related issues. Her's is only one of many similar stories. 

These supplements are called Indrepta and TauriNAC, and their development was  funded by the non profit Sharktank Research Organisation . They are produced for Sharktank and sold at cost price by the commercial biotech company Planetary Biosciences  which was created for this purpose.  Sharktank receives no support from the major  cystic fibrosis charity and relies solely on volunteer workers and individual donations.

My family is fortunate that we can afford to pay for Indrepta and TauriNAC for Scarlett.  However, even though they cost a tiny fraction of  mainstream drugs (around $2 or $3 a day),  they are not covered by Medicaid or health insurance. This makes it difficult for many low income families with cf children to afford even the few dollars a day that they cost.
For this reason, the "Supplements for Low Income Families" fund was created. It provides direct subsidies to families with cf kids. Every penny that is donated goes directly to these families so that they use can afford Indrepta and TauriNAC for their cf kids. Families must meet strict criteria to be eligible. This ensures the money goes to those that really need it.

If cystic fibrosis affects your family then you are welcome to join the closed Facebook group and talk to hundreds of others that are using these products with good success -  Indrepta and TauriNAC Experiences for Cystic Fibrosis ‌ on Facebook.

I'm putting all my efforts into supporting this great cause and have donated thousands of hours to help promote it.  Please join with me and help other kids with cf that are less fortunate than my little granddaughter Scarlett Rose.

You can read more about the "Supplements for Low Income Families" fund  here... ‌