Rosalind Graham

A wonderful coincidence has occurred. The annual Cystic Fibrosis Foundation fundraiser - Great Strides , which we have taken part in every year since Quincy’s diagnosis in 2021, is scheduled for this June, the same month in which we celebrate the anniversary of Quincy first taking Trikafta. 

It’s surreal to think about life in our home a year ago. Ross and I were charged with so much emotion, as it was almost 6 weeks between FDA approving it for 2year olds to its arrival on our doorstep. During that time our patience was tested in many ways, however the support of our CF care team, particularly our social worker, helped us immensely to weather the storms. 

After Quincy took his first dose we awaited the famous “purge“ where all the excess mucus would exit his body as the medication did its work of helping the CFTR protein correct itself. It came within hours, however his little two year old body, so lucky to be diagnosed as early as it was, hardly had much to bring up. 

A year later he is thriving! Ross and I get emotional about it a lot. We spontaneously cry and laugh in moments to ourselves and when we’re sharing our story with others.  Two people more grateful or humbled you could not find then Ross and I. To get to see our son thrive in ways that others had dreamed about. 

We have noticed such a difference in this past year. We have stopped listening for his cough, it seems to have completely vanish. He no longer looks tired when he wakes or has bags under his eyes from nights full of coughing. His appetite has tripled introducing better moods, more energy to play and learn and the cutest little belly popping up over strong little abs. Our friends and family have noticed the change too. Soon after he started Trikafta they began commenting on his boost of energy and how he could now run faster than ever before. “It is just incredible” they all say. 

It is however important we acknowledge where the CF community now stands and how Trikafta, though benefiting so many, does not work for everyone.  As Atlantic Magazine writer Sarah Zhang described in her recent article “After Trikafta , terra incognita.”  Meaning that for those whom Trikafta does not work, there is still so much work being done. Fundraising, research, clinical trials all in search for the answers people so desperately need and most of all the cure. This is all described beautifully in the article., a link to which we have shared below 

https://www.theatlantic.com/magazine/archive/2024/04/cystic-fibrosis-trikafta-breakthrough-treatment/677471/

It is with our best fighting spirit that ‘Team Quincy’ will continue to walk and fundraise! Until CF stands for Cure found! People have been doing so before us and will continue to after us, until it is done.

So if what you have read or listened to here today inspires you to donate, please do, any amount is received with gratitude and excitement for what that donation may go on to achieve. Please also share this with your friends and family. And of course we invite you to join and WALK with us in person or virtually on Wednesday, June 5th at Pier 62, Manhattan. Registrations start at 5pm and the walk will begin at 6pm. 

See you there. Thank you all for your time and support. We could not do this without all of you. 

With hope, gratitude and thanks,

Team Quincy