My Xtreme Hike Story
Mallory Michaels
Fundraising for Central New York Xtreme Hike
Mallory Michaels
Guess what? As a metaphor to the challenges that my cousin Tess & her CF warriors alike face daily, I am climbing some of New York State's highest peaks and plan to claw my way to the top of each summit to raise awareness and funds for this life shortening disease.
For a crash course- cystic fibrosis is a genetic disease that devastates the lungs, pancreas, and other vital organs- making it difficult to breathe and fight life-threatening infections, often leading to serious lung damage and respiratory failure. Due to advancements in therapies and medications such as Trikafta, the life expectancy of individuals with CF has significantly increased in recent decades which is directly related to donated dollars! Trikafta has been transformative for my cousin and 90% of the CF population, BUT we cannot take our foot off the gas because we still need treatments for the 10% and we still very much need a cure.
If you have supported Tess and CFF in the past and are aware of her journey or if you are new here, I’m coming to you LIVE with an annual update on Tess’s health. That means we must talk about Trikafta. Only since Trikafta was approved in 2019, has Tess been able to breathe easier and live without the fear that while experiencing the simple joys of life, she would be jeopardizing her health. Her freshman year of college, pre-Trikafta, Tess endured many lengthy hospital stays to the point that her college career was almost sidelined and talks of lung transplant were her reality. Thankfully due to Trikafta, Tess has been able to complete her degree, pursue a career in public health, begin enjoying exercise, and celebrate her 25th birthday. To a healthy young person, these things may seem trivial, but to Tess they are everything. As her older cousin, I follow along on her social media and excite as she date stamps each and every day with the smallest of things like a snapshot of Jovi’s face- the family dog, a sunset, or completing a pull-up. To me, this is a daily chronical of Tess stopping to smell the roses because she learned early on that life is a gift. Her appreciation, hope and deservedness are what keeps me writing to you year after year for support.
A sprinkle more on WHY I fundraise. This is where I pull at your heart strings to compel you to input your credit card number. When doctors discovered Tess was born with this disease, at the time the life expectancy was less than 30 years old. The weight of this number on my aunt and uncle’s hearts and the thought of my cousin being able to google her “expiration date” have been the driving forces to my fundraising and determination that together we will fund a cure for their baby girl. We are grateful every day that Tess is among the 90% of people with CF whose genetic mutations respond to Trikafta, but that remaining 10% of people need more than ever- our boots on the ground fundraising, advocating and staying unrelentingly vigilant so they too can breathe easier, get off the transplant list, be discharged from the hospital, and experience more of life’s joys. In my mind, I identify the 10% as someone’s Tess and it feels like we are leaving them out in the cold until they have a Trikafta, until their mutations respond to a genetic modulator, and until there is a cure. So please support me on my trek up the mountains for Tess and the 10% by clicking "donate" and helping to fund the continued science and research that is vital in getting us to the summit to cure cystic fibrosis.
If you have made it this far, thank you for your contribution and support.
Mallory
For a crash course- cystic fibrosis is a genetic disease that devastates the lungs, pancreas, and other vital organs- making it difficult to breathe and fight life-threatening infections, often leading to serious lung damage and respiratory failure. Due to advancements in therapies and medications such as Trikafta, the life expectancy of individuals with CF has significantly increased in recent decades which is directly related to donated dollars! Trikafta has been transformative for my cousin and 90% of the CF population, BUT we cannot take our foot off the gas because we still need treatments for the 10% and we still very much need a cure.
If you have supported Tess and CFF in the past and are aware of her journey or if you are new here, I’m coming to you LIVE with an annual update on Tess’s health. That means we must talk about Trikafta. Only since Trikafta was approved in 2019, has Tess been able to breathe easier and live without the fear that while experiencing the simple joys of life, she would be jeopardizing her health. Her freshman year of college, pre-Trikafta, Tess endured many lengthy hospital stays to the point that her college career was almost sidelined and talks of lung transplant were her reality. Thankfully due to Trikafta, Tess has been able to complete her degree, pursue a career in public health, begin enjoying exercise, and celebrate her 25th birthday. To a healthy young person, these things may seem trivial, but to Tess they are everything. As her older cousin, I follow along on her social media and excite as she date stamps each and every day with the smallest of things like a snapshot of Jovi’s face- the family dog, a sunset, or completing a pull-up. To me, this is a daily chronical of Tess stopping to smell the roses because she learned early on that life is a gift. Her appreciation, hope and deservedness are what keeps me writing to you year after year for support.
A sprinkle more on WHY I fundraise. This is where I pull at your heart strings to compel you to input your credit card number. When doctors discovered Tess was born with this disease, at the time the life expectancy was less than 30 years old. The weight of this number on my aunt and uncle’s hearts and the thought of my cousin being able to google her “expiration date” have been the driving forces to my fundraising and determination that together we will fund a cure for their baby girl. We are grateful every day that Tess is among the 90% of people with CF whose genetic mutations respond to Trikafta, but that remaining 10% of people need more than ever- our boots on the ground fundraising, advocating and staying unrelentingly vigilant so they too can breathe easier, get off the transplant list, be discharged from the hospital, and experience more of life’s joys. In my mind, I identify the 10% as someone’s Tess and it feels like we are leaving them out in the cold until they have a Trikafta, until their mutations respond to a genetic modulator, and until there is a cure. So please support me on my trek up the mountains for Tess and the 10% by clicking "donate" and helping to fund the continued science and research that is vital in getting us to the summit to cure cystic fibrosis.
If you have made it this far, thank you for your contribution and support.
Mallory
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