Shanee Martin

We are Shanee and Victor Martin and our granddaughter ,Reis, has cystic fibrosis.

Cystic Fibrosis is a devastating genetic disease that affects every part of the body .

Reis is a happy, healthy, active 10 year old girl with boundless energy. She is usually out on her roller skates  or running . She is determined to keep up with her dad who runs marathons! However, at birth, she required major surgery and was hospitalized in the NICU for almost 3 months.

Reis was very fortunate that her unique mutation was responsive to Kalydeco and she was able to start this at 2 years old , switching to Trikafta at 6 years old. Because she was able to start so early, she has been spared most of the devastating effects caused by Cystic Fibrosis. She takes pills three times a day and does chest PT daily but otherwise is like any other 10 year old. 

Both Kalydeco and Trikafta were developed as a result of major funding for their research by the CF foundation.  They have changed the whole paradigm for almost 90% of people with CF, from a lifespan of 20 years to over 60 years! As a pediatrician, and a research scientist  we are still in awe of these “magic medications “.

Yet, some people with CF do not benefit from existing therapies and research continues to find other treatments and the dream of a cure. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease. 

You can support us!

By supporting our fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. We only fundraise once a year but this is a cause that is very dear to our hearts. 

Shanee and Victor Martin