Bryan and I are going to be doing the Great Strides Walk in Huntington Beach on May 14, 2022 to raise money for the Cystic Fibrosis Foundation. We would love if you could join us (you will need to register prior) and/or donate to our walk. Currently the CF Foundation has put an emphasis on research for the final 10% meaning those who do not currently have access to a modulator. The final 10% includes Rowland. This organization is amazing and its fundraising impact is apparent with the newly approved modulator, Trikafta which has changed lives. I personally have experienced wonderful support from the OC CF Foundation. It truly is a well run organization.
Rowland was diagnosed with Cystic Fibrosis at six months old. His diagnosis was missed on the carrier screening I took while I was pregnant and his newborn screen because he has two rare mutations. To learn more about our story and his two rare mutations you can check out my blog link below:
https://rowlingwiththepunches.blogspot.com
If you are interested in learning where the money you donate specifically goes, check out the 2020 Annual Report that is available on their website. The link is below:
https://www.cff.org/sites/default/files/2021-09/2020-Annual-Report.pdf
Connect With Us
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
FOR YOUR SAFETY AND THE SAFETY OF OTHERS: