This year’s fundraising for the CF Annual Fund event is unlike any other year, as are most things during the pandemic.
All physical CF fundraising events have been postponed which leaves virtual fundraising as the main mechanism for continuing to support the science needed to find the cure.
The drive to advance new and improved treatments to address the many manifestations of CF, including challenges associated with advanced disease, continues each day.
We have reached unparalleled advances in the treatment and care of cystic fibrosis.
The therapeutic drugs developed locally by Vertex Biotech have been extraordinary.
The most recent drug,Trikafta, has been a game changer for many, many patients including our son, Peter.
This drug benefits the majority of patients as it targets the most common gene combination Double Delta 508.
Peter began the drug therapy 9 months ago and has seen remarkable improvement in his quality of life including increased lung function, stamina and energy.
However,there are the downsides as well. Consuming a powerful drug has side effects including possible liver and other organ damage with long term use.
So while we are thrilled he is benefitting from Trikafta, we must continue on the path to a cure.
The recent drug developments would not have come to fruition without the fundraising efforts of so many in the CF community.
And we cannot stop until CF stands for Cure Found. It is to this end we write you today.
Please consider a generous donation to the CF Foundation during these unique times of limited fundraising avenues.
As always, thank you for your continued support.
The video was taken earlier in the summer in the eastern Sierras while on a hike with Peter, Shauna and their son, Wayland. Hope you enjoy.