This is my seventh year as team leader for Team Reis. My granddaughter, Reis, will turn 7 in August. She is a thriving, happy first grader. She continues to grow in leaps and bounds. I am already looking forward to the day when she is as tall as me!
The early days of her birth are now a distant memory, her CF diagnosis, long NICU admission, surgeries and the huge uncertainties of what the future would hold.
She is a beautiful, happy child who loves school , soccer and her little sister, Evren. When asked about her favorite thing at school she says that everything is wonderful! She even asks for homework!
She remains strong and healthy. She started on Kalydeco when she was two years old and this has truly been “magic medicine”. It corrects the CF defect at the cell level. As a physician I am still in awe of the research that led to the understanding of cell function and basic science that then alllowed the development of this medication.
Reis will have to take this every day of her life, but she is one of the lucky ones. Because she was able to start Kalydeco so early , we are hopeful that she will avoid many of the long term complications of Cystic Fibrosis
Each year I see more medications being developed with the hope of providing relief to others with different mutations. The newest medication approved, Trikafta, holds out the promise of treatment for many more patients. I am eager to see how this plays out over the next few years and hope that it will eventually be normal to start patients on this at birth and never see the terrible complications of cystic fibrosis.
The extensive research for the development of Kalydeco and Trikafta was achieved by funding from the CF foundation which also continues to fund research for other drugs that will be effective for all CF patients. Although it is great that there are these treatments, they are not a cure. The goal of a permanent cure remains a dream and each year new advances bring new hope. The field of gene therapy continues to move closer to this ideal.
Please help us raise the funds needed to ensure that these advances can continue, to turn these into hope for all those who daily struggle with CF and have not yet been able to have their own “magic medicine” and towards the dream of a cure. It would be amazing to see CF stand for “cure found” in my professional lifetime.
All donations are tax deductible.
It is a joy watching Reis grow and experience new challenges. I want her to have a bright future and unlimited horizons. Please help make this a reality. With your help we will conquer this disease! I only fundraise once a year and this is the cause that is very dear to my heart.