Hello family and friends,
This continues to be a difficult time for many; however, the fight to treat and cure CF has not stopped. We are happy to participate in another year of Great Strides in Portland, reimagined as Great Rides at PIR on May 8th. Now, more than ever, the work of the CF Foundation is needed. For such a small organization they have made amazing advances in the world of medicine for the CF community. We are getting closer and closer to a cure everyday. Those aren't just words or wishful thinking.
In the 1980s, the life expectancy of a CF patient was early teens. Now it's in the early 40s. Just last year, a drug called Trikafta was approved, revolutionizing treatment for 90% of CF patients. In fact, those who have been approved for the drug say they noticed their breathing improve almost immediately upon taking it. this is thanks to the work of the CFF.
Neila and Von are on the waiting list for Trikafta. Our work to get everyone life-saving treatment never stops.
Over the past several years, many of you have helped us raise money and awareness for this dreaded disease that affects my young niece and nephew. Keep reading to learn more about our family's story. And please help us continue our fight to find a cure.
In May 2010, I was introduced to the details and harsh reality that is Cystic Fibrosis (CF), a genetic disease that affects over 30,000 Americans and 70,000 individuals worldwide.
My niece was born with under-developed lungs and an intestinal blockage due to her pancreas not functioning properly. At 2 days old, she underwent emergency surgery to remove the blockage and was immediately diagnosed with CF. Two years later, her brother was born. And with a 25% chance that he would also have CF his diagnosis was confirmed at birth.
What does this mean?
Cystic fibrosis means a defective gene's protein product causes the body to produce unusually thick, sticky mucus that:
- Clogs the lungs and leads to life-threatening lung infections.
- Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.
In the 1950s, few children with CF lived to attend elementary school. Today, the life expectancy of a CF patient has reached about 40 years old. Enzymes, vitamins, breathing treatments, and oscillating vests are a part of my niece's and nephew's daily lives. And events like Great Strides have made that possible.
Because of the research that the CF Foundation has funded and promoted over the years, we have made significant strides in treatment to manage CF symptoms and to increase a patient's life expectancy. The Foundation also believes we may be getting close to a cure for certain strains of the disease.
Their Lives Today: Neila and Von are like any other 7 and 10 year old; they love to play, get dirty, sing, laugh, and keep up with their friends. Yet, they can easily be admitted to the hospital for a week or two at a time due to a cold, something that seems insignificant to you and me. Because of the work primarily accomplished through the Cystic Fibrosis Foundation, scientists have developed new treatments, including two breakthrough drugs to help CF patients live longer, fuller lives, with fewer trips to the hospital. In December of 2016, Neila was approved as a candidate for one of those drugs, called Orkambi.
We hope they both continue to thrive on their medication and treatments. And I want to thank you all for your support in being a part of these new breakthroughs.
How you can help
If you would like to support our cause with a donation (as little as $5 can make a difference!), please make a donation from this page or let me know if you'd like to submit a check.
Spread the word! If you know someone who would like to help, please share my story with them. More awareness is needed to support CF families.
83 cents of every $1 donated to the CF Foundation goes to research, therapy programs, and treatment support for CF families. It is rated 4 of 4 stars by Charity Navigator. Donations are 100% tax deductible.