Do you recall reading Henry Wadsworth Longellow’s 1847 epic poem, “Evangeline?” Our Evangelynn/Eva, as her namesake, embodies almost everything about her: strong, irrepressible, competent, confident, empathetic, adventurous, resilient, patient, committed, loyal… As Evangeline loved to dance and sing and tell good stories, establishing a happy new home for the Acadiens exiled from Canada to south Louisiana, our Evangelynn also loves to dance and sing (church choir, duet with mom in worship service, in school play) and tell good stories (Just ask her grandfather and me about her imagination during our tea parties and Kids’ Messenger times!), thriving through times of increased treatments for infections that progressively damage her lungs.
This summer, we took our Eva to the place where Evangeline waited for her one true love Gabriel, by the banks of Bayou Tech and the Evangeline Oak, named in her honor, in St Martinville, LA. Just like Evangeline patiently waited by the banks of Bayou Teche for her one true love, I caught OUR Eva (Evangelynn) gazing down those same river banks, waiting… As Evangeline continued to patiently HOPE, our Evangelynn HOPES too (“I’m not really all that patient, Grandma!” says our Eva!! Grandma and DeeDah aren’t all that patient either, sweet, Eva!!!) Waiting, watching hopefully….for her one true love? Or for a CURE???
Research improves the lives of not only those with CF but also those CARRIERS of the CF gene…1 in 31 have the CF gene and may not know it! Recent evidence shows that “CF carriers are at increased risk for most of the conditions that commonly occur in people with CF.” So your donations impact the lives of ALL with CF! AND carriers of the CF gene!!!
We recently returned from Cystic Fibrosis Foundation’s Volunteer Leadership Conference in D.C. We heard some AMAZING stories and statistics about what YOUR DONATIONS have accomplished scientifically, clinically, and personally for folks living with CF. They are making your money/donation count: Transformative care and Ultimately the CURE for ALL living with CF.
The CFF Director of Clinical Research proclaims: “This is an exciting time for CF!”
CHECK OUT THE NUMBERS on these charts to see why he said this!!!
The research for Trikafta (helping 93% of people with CF) and other medicines and treatments for those with CF is indeed phenomenal and we are GRATEFUL! BUT their lung disease is still progressing-with every infection, cold, etc. And many folks with CF are gazing into the future, acknowledging they still feel as if they may be taking “ a peek out the window at my mortality”
So how are your donations to Eva’s Alliance impacting EVA’S life???
• No more pseudomonas (whispering*)
• Over 100 lung function
• BMI (weight to height) improved to its highest level EVER this year, after starting Trikafta.
• Jumped up and down, CHEERING when she heard the final $$ amount raised for “Eva’s Alliance Gives CF the Boot” by her mom and friend for their EXTREME hike in Sedona, AZ this year!! Then clasped her hands together, looked up and said "Oh THANK YOU!" As her mom said, "the silent prayers she imust be saying!"
1. Register to become a member of Eva’s Alliance Team and join Eva and our family on September 17 in Great Strides.
2. Donate to Eva’s Alliance, helping us reach our goal- and keep Eva jumping up and down cheering!!
3. Pray for the researchers who are working on a CURE for CF.