Please join us to walk in Eau Claire on May 18th!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for them and hope you will support me in my efforts.
This will be our ninth year Salty Toes will be fundraising for the Cystic Fibrosis Foundation. We support them for our two children with CF. Arya (8 1/2 yrs old)and now Ivan will be 4 in March. Arya and Ivan were both diagnosed shortly after birth through the Wisconsin newborn screening.
Our team name "Salty Toes" is in honor of my two children Arya and Ivan and their little toes. One side effect of CF is that their bodies lose more salt through sweating, which is why they have salty toes:)
Arya is in second grade this year, She is 8 years old, but really she is going on 15. Arya is a ball of energy and loves to spend time outside when it's warm. Her favorite things to do include jumping on our trampoline and riding her scooter. When she's inside, you'll find her working on her Lego creations or playing games. She is a great big sister to her brother and loves to tell him what to do(and I think he likes it too)
Ivan has had a good year and is growing up so fast. He is still loves hugs and kisses from his parents and enjoys cuddling up to read a book. He can be found running around the house chasing his sister, and when the weather is nice he only wants to be outside. Ivan is still obsessed with Halloween and will talk your ear off about zombies, vampires, and werewolves, he is so silly. He was able to start on Trikafta, a life-changing medication for kids and adults with CF. We were so thankful it was released to a younger age group.
Although both children are doing well and thriving, there is still no cure for CF. Our days consist of many treatments with the percussion-vest and nebulizer treatments to loosen mucus in their lungs. Both kids need to take many medications with their meals to be able to properly digest food. The future is bright, but we still have struggles. The kids get blood work at the lab to keep an eye on their liver enzymes, medications they are on could aggravate the liver and lead to liver failure if not closely monitored. We have a constant battle with tummy pain, CF has a huge affect on the digestive system and it's a balancing act to keep things moving in the right direction (if you catch my drift).
Thank you to all who have donated, or participating in this walk with us. We are blessed to have such great family and friends.
Throughout the years we have raised so much money for the Cystic Fibrosis Foundation. Just think of all the medical advancements and clinical trials that money went towards!! Go Salty Toes!
Join us in fundraising this year. Our annual Pool Tournament is again a 2 day event! Join us April 19-20, Marie Webber is our contact for signup. We are always looking for items for our raffle if you are interested in donating. It has been such a fun and successful event for our team. It's a great time to stop in and say hi, even if you do not play pool.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the link lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.