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
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.