My Great Strides Story
Lee Hein
Lee Hein
There is currently no cure for cystic fibrosis (CF). I’m walking to help change that reality. CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
I first became aware of Cystic Fibrosis (CF) twenty-six years ago when my then 11-year-old son, Steven, was diagnosed with CF. Though he had some CF symptoms since he was a baby, he did not begin to display what I now know to be the characteristic cough until he was eight. It took many visits to many doctors and specialists to finally have Steven correctly diagnosed.
In 1999 the only therapies available to those with CF were a limited set of antibiotics and artificial enzymes used to counter pancreatic insufficiency caused by the disease. These treatments only mitigated the damage caused by CF; treating only the symptoms of the disease and the outlook was not good. The life of a person with CF at the time was a constant battle with uncomfortable daily physical therapy, inhaled and oral antibiotics, and literal handfuls of artificial enzyme pills every time they ate. Two-week hospitalizations for intravenous antibiotic therapy every 6 to 18 months were the norm.
Today the outlook for someone with CF is much better. Thanks to the generosity of the foundation’s supporters and CF Foundation funded research. There are now two highly effective therapies available for about 90% of the CF patient population. Trikafta, which has been available for a few years now and the newer Alyftrek is available. While not a “cure”, both Trikafta and Alyftrek work at the cellular level to correct the basic cellular defect at the root of the disease. Because these two new therapies many CF patients have seen their Pulmonary Function Tests (PFT) score as much as double in just two-weeks; there is a big difference between 35 and 70% lung function. Many of the younger patients whose lung function had not begun to decline are now staying level because of Trikafta and Alyftrek.
However, the struggle to treat CF is not over! Approximately 10% of the CF population cannot be helped with Trikafta or Alyftrek because they lack the specific gene mutations that Trikafta and Alyftrek treat. The treatment of those within this 10% are still limited to treatment of the symptoms of cystic fibrosis and they are still in need of help.
Moreover, despite Trikafta and Alyftrek being a “miracle” drugs neither cure the disease. Trikafta and Alyftrek, along with the host of other CF specific therapies can always be improved and expanded. The CF Foundation continues to expand its research and the ways it can help the CF population. https://apps.cff.org/trials/pipeline
I am happy to provide an update on my 37-year-old son with CF, Steven. Steven, now Dr. Steven, is a wildlife biologist with U.S. Fish & Wildlife Service (USFWS). Steven has been on Trikafta since it was approved. Because of Trikafta and the other treatments developed by the CF Foundation, Steven continues to do well in both his private and professional life.
Without the CF Foundation developed medication Trikafta and Alyftrek, digestive therapies, and a host of other research funded by the CF Foundation, Steven and many other of those with CF would not be with us today. However, there is still work to be done. There are still the 10% that Trikafta and Alyftrek cannot help. View the link for an up-to-date status of the CF Foundations drug research. https://apps.cff.org/trials/pipeline
Please help me exceed my fundraising goal by donating to Steve’s Team Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible. Please give me a call or e-mail me if you have any questions.
410-917-3954/leland.hein@gmail.com
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
I first became aware of Cystic Fibrosis (CF) twenty-six years ago when my then 11-year-old son, Steven, was diagnosed with CF. Though he had some CF symptoms since he was a baby, he did not begin to display what I now know to be the characteristic cough until he was eight. It took many visits to many doctors and specialists to finally have Steven correctly diagnosed.
In 1999 the only therapies available to those with CF were a limited set of antibiotics and artificial enzymes used to counter pancreatic insufficiency caused by the disease. These treatments only mitigated the damage caused by CF; treating only the symptoms of the disease and the outlook was not good. The life of a person with CF at the time was a constant battle with uncomfortable daily physical therapy, inhaled and oral antibiotics, and literal handfuls of artificial enzyme pills every time they ate. Two-week hospitalizations for intravenous antibiotic therapy every 6 to 18 months were the norm.
Today the outlook for someone with CF is much better. Thanks to the generosity of the foundation’s supporters and CF Foundation funded research. There are now two highly effective therapies available for about 90% of the CF patient population. Trikafta, which has been available for a few years now and the newer Alyftrek is available. While not a “cure”, both Trikafta and Alyftrek work at the cellular level to correct the basic cellular defect at the root of the disease. Because these two new therapies many CF patients have seen their Pulmonary Function Tests (PFT) score as much as double in just two-weeks; there is a big difference between 35 and 70% lung function. Many of the younger patients whose lung function had not begun to decline are now staying level because of Trikafta and Alyftrek.
However, the struggle to treat CF is not over! Approximately 10% of the CF population cannot be helped with Trikafta or Alyftrek because they lack the specific gene mutations that Trikafta and Alyftrek treat. The treatment of those within this 10% are still limited to treatment of the symptoms of cystic fibrosis and they are still in need of help.
Moreover, despite Trikafta and Alyftrek being a “miracle” drugs neither cure the disease. Trikafta and Alyftrek, along with the host of other CF specific therapies can always be improved and expanded. The CF Foundation continues to expand its research and the ways it can help the CF population. https://apps.cff.org/trials/pipeline
I am happy to provide an update on my 37-year-old son with CF, Steven. Steven, now Dr. Steven, is a wildlife biologist with U.S. Fish & Wildlife Service (USFWS). Steven has been on Trikafta since it was approved. Because of Trikafta and the other treatments developed by the CF Foundation, Steven continues to do well in both his private and professional life.
Without the CF Foundation developed medication Trikafta and Alyftrek, digestive therapies, and a host of other research funded by the CF Foundation, Steven and many other of those with CF would not be with us today. However, there is still work to be done. There are still the 10% that Trikafta and Alyftrek cannot help. View the link for an up-to-date status of the CF Foundations drug research. https://apps.cff.org/trials/pipeline
Please help me exceed my fundraising goal by donating to Steve’s Team Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible. Please give me a call or e-mail me if you have any questions.
410-917-3954/leland.hein@gmail.com
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