Cystic Fibrosis - Great Strides 2024


The Great Strides walk for Cystic Fibrosis was on April 14, 2024 in Walnut Creek - and it was lovely! We met people with CF, families of people with CF, and staff from organizations that are trying to help CF patients. Hearing families talk about how CF has affected their lives is powerful - and hearing from CF patients that are vibrant and energetic is so hopeful.


They had a "rose garden" where I put Tara's name. The "65 Roses" story dates back to 1965 when an observant 4-year-old, Richard "Ricky" Weiss, hearing the name of his disease for the first time, pronounced cystic fibrosis as "65 Roses." Today, "65 Roses" is a term often used by young children with cystic fibrosis to pronounce the name of their disease.


This picture was taken by the CF Foundation. (Thomas does not look very enthusiastic)



I am so grateful to those that have donated - we walked in honor of you - and of Tara Telford.

Just three decades ago, the average person with cystic fibrosis would live only to the age of 30, but now 50 years is typical, and some patients with CF live into their 80s. This means they live long enough for other health concerns to surface. This increase in life expectancy is due to treatments that were made possible by funding from donors just like you.

Several people mentioned Trikafta, which is a drug with 3 medications used to target the underlying cause of CF symptoms. It can only be used for some of the CF genetic variants, but it is changing lives and giving hope to CF patients. If you're interested you can learn more here.

What Is Cystic Fibrosis?

Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. 

There are close to 40,000 children and adults living with cystic fibrosis in the United States (and an estimated 105,000 people have been diagnosed with CF across 94 countries), and CF can affect people of every racial and ethnic group. 

In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky.

In the lungs, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. For this reason, avoiding germs is a top concern for people with CF.

In the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body absorb food and key nutrients, resulting in malnutrition and poor growth. In the liver, the thick mucus can block the bile duct, causing liver disease. In men, CF can affect their ability to have children.


Comments

Post a Comment

Popular posts from this blog

Thank you for your CF donation - 2025

Image
Thank you to the following individuals for making donations in 2025 (our 16th year of fundraising) to either the  Tara K Telford Graduate Student Award at UC Davis  or the  Cystic Fibrosis Great Strides event .  Your generosity is appreciated! If you make a donation to Tara's fund (and I hope you do - that is where I donate every year), please let me know so I can properly thank you - I won't get a notification. Donation information can be found here:  https://nystromfam.blogspot.com/2025/02/cf-fundraising-2025-16th-year.html CFF = Cystic Fibrosis Foundation donation UCD = Tara K. Telford Graduate Student Award at UC Davis donation Gina Piper Katie Loughnot Ryan Long Bill and Maggie Foley Erin Haley (15 years!!) Michael Kan Julie Pierron Corey McIntyre Christine Butler Shannon DeCola Joy and Jared Goor (15 years!!) Hassan Mahmoud Jenn Bell Bill and Sharon McKee Casey Evans Michael Kan (again ... yay!) Bruce and Jean Kelley Angie Rohr Loy and Marge Hayes Man...
Read more

CF Fundraising - 2025 - 16th year!

Image
This is my   16th year   raising money to help find a cure for cystic fibrosis. I do this in memory of my friend, Tara, who passed away on November 18, 2017.  I know there are a lot of deserving causes to champion. Every little bit adds up and, while I hope you support CF research,  I really just want all of us to make the world a better place .   Tara was full of positivity, throughout her life - throughout her illnesses, hospital stays, medications, pain and discomfort.  She made the world feel a little brighter.  She is a reminder that life is precious - life is short - and everything is going to be OK ... have hope.   Today  I am asking for :   1) Please consider making a donation to the  Tara K Telford Graduate Student Award for Cystic Fibrosis Research  at UC Davis. You can do this online from the following link.  Please let me know that you have donated to this fund so I can properly thank you. I will not ...
Read more

Cystic Fibrosis Great Strides - 2025

Image
  The Cystic Fibrosis Foundation Great Strides walk was on May 10 and it was, as always, a beautiful event. Ashley was off on the Senior camping trip and Thomas had a last-minute tennis tournament. So it was just me! The 2025 Ambassador was a woman named Robyn (for more information ) and she told her story before the walk. Wow - she is inspiring! She spoke about how a relatively new medication called Trikafta (for more information ) has dramatically improved her quality of life. Trikafta has reduced the need for lung transplants, improves lung functions, increases lifespan, reduces hospitalizations and has helped CF patients view their disease as a more manageable chronic condition rather than a rapidly progressing life threatening disease. Isn't that wonderful!! The CFF (and the walk you have helped sponsor) played a critical role in the research and approval of Trikafta. (Trikafta is made by a company called Vertex. In one of these weird coincidences, I listened to a Pricewaterho...
Read more