Rose's Bunch

Hello, Friends and Family!

Rose has made so many great strides over the years thanks to Great Strides! Three years ago she was able to finally be rid of the g-tube she endured since she was a baby. This year, she was allowed to cut her respiratory therapy in half, to just once a day!  

She is excited to raise Cystic Fibrosis awareness at our annual walk for all those that are still suffering and not able to benefit from new treatments like she has. 

As you know, Great Strides is the largest fundraising event for the CF Foundation, which is dedicated to attacking CF from every angle: supporting new drug development, improving quality of life, and—ultimately—finding a cure for this horrible and eventually suffocating disease.

We are proud to say that over the past 16 years, our team, ROSE’S BUNCH, has raised over $112,700 for the Cystic Fibrosis Foundation!

The money we raise is aggressively put to work! Work that Rose has been a fortunate beneficiary of and a brave participant for in six clinical trials starting when she was just 7-years-old: digestive enzymes to help her extract nutrition from food, Pulmozyme and Hypertonic Saline to thin sticky mucous in her lungs, TOBI to fight tough airway bacteria, and now the breakthrough triple-combination drug Trikafta that is changing lives for so many. Some older, sicker patients on Trikafta have seen their lung function increase from only 30-50% lung capacity to 70-90%!

Look at the CF Foundation’s latest patient data showing that Trikafta is helping:

53 is the current median life expectancy. Up from 37 when Rose was born.

32 people with CF needed a lung transplant in 2022, compared to 250 needing one on average in previous years.

675 women were pregnant in 2021, a marked increase from the years 2000-2019 when the numbers were stagnant.

10% of children and 14% of adults received IV antibiotics for pulmonary exacerbations, less than half of what was seen in 2019.

And,Trikafta has just been approved for children aged 2-5 years with certain mutations of CF. Not all people with CF can benefit from Trikafta though, and there is still work to be done. 

We were so happy Rose could start taking Trikafta in January of 2020! We are hoping that by starting it young before her health starts to decline, she can maintain her 100% lung function longer and won’t have to face what these older patients in their 20s and 30s have faced. She is also still loving her new life, free of the g-tube she had from the ages of 1 ½ to 13, a freedom I doubt she will ever tire of.  And now therapy just once a day, plus, no extended hospital stays for lung infection in years. 

Her dreams are truly being realized and her future shines brighter BECAUSE OF YOU! Thank you so much for your continued support!

With Warmest Regards and Our Sincerest Gratitude ~ ♥ Laura ♥ Mike ♥ Rose ♥ Alice ♥ Sam ♥