We'd like to ask for your support in our efforts to raise awareness and funds to benefit the Cystic Fibrosis Foundation. We are doing this for our love of Ashley.
Ashley was diagnosed at birth with Cystic Fibrosis, which affects about 30,000 people in the US. When she was born, the median life expectancy for those with CF was 37, today that expectancy has gone up to 47 (but that is still far too young).
Cystic Fibrosis is a recessive disease which is passed on when a child inherits 2 mutated cystic fibrosis transmembrane conductance regulator (CFTR) genes (1 from each parent). Those mutations cause a malfunction in certain cells which leads to a buildup of thick mucus, which in turn leads to persistent lung infections, destruction of the pancreas, and complications in other organs. Many with CF end up needing lung transplants, feeding tubes, ports for IV antibiotics at home.... and have many other medical needs that affect their daily life.
Ashley, has luckily been very healthy, but in November 2018 her health declined to the point where she was admitted to Boston Children's hospital for 12 days to receive a PICC line and IV antibiotics. In 2019 she faced another hospitalization and her first CF-related surgery. Every day at home she takes two 30-minute breathing treatments which consist of 3 inhaled medications via nebulizer and a vest machine with vibrates to loosen the mucus in her lungs followed by another inhaler. She also takes enzymes in order to digest her food as well as supplements & appetite stimulants - in total she takes 4 inhaled medications 2 times a day and 20-24 pills throughout her day. Many other CFers have a similar day and many still have to do even more to stay healthy.
The research for treatments and a cure for CF is not government-funded ... it is 100% funded by private donations. The Cystic Fibrosis Foundation is a worldwide leader in that research and the annual Great Strides walk is their biggest fundraising campaign. This year the goal is to raise $37,500,000.
The CFF has made incredible progress in greatly improving the lives of those with CF and they will not stop until a cure is found. We would give anything for that to happen .... please help us to support the CFF and the good that they are doing for Ashley and for other CFers and their families.
Ashley's Facebook Page - if you'd like to follow our journey: www.facebook.com/AshleyFriend.CFWarrior
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF -- join our team today!
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.