2019 was a fantastic year and we are taking on 2020 like champs!! Lubbock continues to make huge success and raise more money each year with our two events, the Great Strides walk and the Lubbock Taste Tour! I continue to participate in and volunteer for these two events and we are absolutely thrilled to see what will happen in 2019! For me, life is busy and ever changing as always!! I have been hospital free since April 2018!! YAAY and AMEN!!! One thing I'm accepting more as I grow up is that life and in particular life with CF is unpredictable. Yes I've stayed away from the hospital as much as possible the last several years, only 2 admissions in 4 years!! However, that doesn't mean that struggles don't continue to arise. There is more to this disease than just the diagnosis of CF. I am treated for at least 3 other diseases/conditions that coexist with/because of CF. They can be just as difficult to treat or accept. I stay positive and continue to do what needs to be done to take care of myself. CF is a full time job! Life changes, CF changes, and still we continue to rise above and adjust to the changes! Daniel and I are approaching our 1 year anniversary in March. Emily, Bailey, and Katelyn are growing and we are so incredibly proud of all three of them! Daniel is working hard and making sure all of his girls are taken care of. I started a new job and am thrilled to say I have returned to my true nursing love in the maternity world! Our most exciting news right now is that I am sooooo close to getting to start Trikafta, the newest CF drug on the market that was just approved by the FDA the end of October 2019. I could not do this without the support of my amazing family and friends!! Each one of you are so important to me and I love you all!!
Amazing advances are being made in CF care and treatment! The average age of someone with CF is Now in the mid-40s!!! The newest drug Trikafta, treats 90% of the population. The drugs that have been approved in the last several years for adults are now being approved for children younger and younger. There are more drugs in 2nd and 3rd trial phases that we hope to see on the market for use by all of us in the next couple of years. All of this is because of these events and people like you, raising awareness and funds to help us find a cure!! I will see a cure in my lifetime!! That being said, I am still fighting this disease, my friends are still fighting this disease in and out of the hospital, and we are still laying our friends to rest who have fought long and hard. So, the progress must continue!!
Now is your time to help!! There are a couple ways you can do that!!
1) We are a family that strongly believes in the power of prayer. Please Pray for me, for others with CF, for the medical professionals and researchers who work to add tomorrows to our lives, for the friends and family who support and take care of us, and for a cure for CF!
2) Donate to Erin's Eagles and support me and my team in our goal to raise $4,000 for the walk this year. 90 cents of every dollar you donate goes straight to research to find that cure!
3)Join us and walk with us this year!! It is easy to join the team here on the website and come walk with us at the park on May 9th at Buddy Holly Park!! We'll have music, food, and lots of fun!!
Thank you all for your past, present, and future support in all ways. I could not be here today without each of you!! Hope to hear from you all soon!
Love to all,
Erin, Daniel, Emily, Bailey, and Katelyn
"But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.