Help Taylor raise money

Hello! I am running the Falmouth Road Race this year in support of the Cystic Fibrosis Foundation. Your donation will go directly to an organization that has made great strides in helping improve the lives of people living with CF. See below for more information on CF and the Cystic Fibrosis Foundation. Thank you!

(WHAT IS CF)

In people with cystic fibrosis, a defective gene causes a thick buildup of mucus in the lungs, pancreas and other organs. In the lungs, mucus clogs the airways and traps bacteria, leading to infections, extensive lung damage and respiratory failure.

(WHY SHOULD I GIVE)

Every person who has cystic fibrosis should have the chance to live a full, healthy life and not all people with CF can benefit from existing therapies.

We have made some great progress. Innovative therapies are transforming the lives of thousands of people with CF. Yet progress comes with new challenges. People with CF increasingly face complications associated with their disease and many people with CF are still waiting for their breakthrough treatment. Genetic therapies – our best hope for a cure for all people with CF – are more complex than anything we have ever done and will require a substantial investment. There are many who cannot tolerate developed treatments or who have rare mutations for which there is no treatment. 

We cannot and will not stop until there is a treatment or cure for all with CF.

(WHAT DOES MY DONATION DO)

Thanks to the work of the Foundation and the support of donors like you, the life expectancy of someone born with CF has doubled in the last 30 years

Genetic therapies – the best hope for curing cystic fibrosis – are more complex than ever and will require a substantial investment. Progressing a genetic therapy could cost the Foundation 10 times more now than a decade ago.

The Foundation’s highly successful venture philanthropy strategy will help accelerate the pace of progress in CF drug discovery and development and ultimately help end this disease. Today, they are investing more than $225 million a year in CF research and care.

The Foundation has been busy during the pandemic providing vital support to the CF community and continuing on with its Mission to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care. 

They provided 15,000 home Spirometers to CF Care Centers to be distributed to patients and support Telehealth appointments.

Members of the CF community for the first time could participate together virtually in CF forums previously restricted due to infection control issues.

In 2020 the Patient Registry Data Report revealed that for the first time the median predicted survival is 50 years for people with CF. This means that half of people born from 2016 – 2020 are predicted to live beyond 50.  

In 2021 the FDA approved the use of Trikafta for children ages 6-11 with certain mutations.

In 2022 the Foundation surpassed $100 Million in research funding through its Infection Research Initiative, created to help better address intractable infections. 

On-Line Resources

Some basic info on what CF is can be found here

https://www.cff.org/intro-cf

Some great articles on what the Foundation has been up to can be found here

https://www.cff.org/news