LATE BREAKING NEWS: September 14, 2020: “After POSITIVE child safety data reported from global Phase 3 clinical trials, Vertex is seeking expanded FDA approval for children age 6 to 11 (EVA’S GROUP!) for Trikafta, a triple-combination drug therapy containing modulators or molecules that help the defective gene function more effectively.” This drug has been transformative for most folks with CF, providing less sticky mucus-thus healthier lungs and pancreas UNTIL A CURE CAN BE FOUND!! WE ARE SO EXCITED FOR EVA!!!!!!!! NOTE This is NOT a cure, but will help her lungs stay healthier UNTIL the cure!
YOUR RESEARCH $$$ AT WORK!!! Martin and I cannot THANK YOU ENOUGH!!!
Many of you have joined our team, Eva’s Alliance Gives CF the Boot, and donated through my 2020 birthday fundraiser; THANK YOU AGAIN!!! You will see where your donations are going as you read this 2020 edition of Eva’s Story…
In this year when there is so much discussion about science and evidence, it seems right to share the evidence that: EVA and all those living with CF NEED A CURE and your donation to Cystic Fibrosis Foundation through Eva’s Alliance makes a difference in her life and the lives of thousands of others living with Cystic Fibrosis.
Covid-19 presented the Cystic Fibrosis Foundation with some difficult decisions. Major ones included all the in-person fun fundraising events that provide the researchers and their labs with the tools they need to FIND THE CURE. Normally, we would be letting you know when and how to join our Eva’s Alliance Great Strides Walk Team as we “Give CF the Boot!” CFF made the WISE DECISION to make ALL events virtual/online, so we are asking you to JOIN OUR TEAM to work together to provide the researchers with what they need to KEEP WORKING ON A CURE! In light of that request, we are sending you our annual update on Eva’s progress and inviting you to join our team by donating to the Cystic Fibrosis Foundation.
If you have not yet donated and joined the team, please consider doing so now.
Eva turns 10 on September 25, a full decade of breathing treatments every single day -except the 1st month of her life before we knew she had sticky mucus blocking several of her body’s organs due to Cystic Fibrosis.
The Cystic Fibrosis Foundation is 65 years old this year. Check out why “65 roses” is so meaningful this year www.cff.org/About-Us/About-the-Cystic-Fibrosis-Foundation/The-65-Roses-Story/
The rose…ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.
Here’s Eva 2020
EVIDENCE of need for a cure-by the numbers
- 1st hospitalization EVER in all of her 9 years (a miracle!!)
- 2 hospitalizations, back to back (UGH!!)
- 1 Bronchoscopy (yes, that means surgery, sedation, pre and post-op anxiety)
- 2 PICC lines
- 4 IVs
- 22 days in the hospital [ANXIOUS] followed by
- 14 days of home IVs
- DAILY: Medications, vitamins Inhaled or nebulized = 9 daily
- DAILY: Oral Medications =26 daily
- Breathing treatments, 30+ minutes per treatment 3 daily
- “Sick plan” Add 2 inhaled meds and 1 MEGA antibiotic and 2-3 additional breathing treatments
WHY donate and join?
- The Cystic Foundation gets NO money from the federal government.
- NONE of the CFF fundraisers have been able to happen in person; the online fundraisers are bringing in a much smaller percentage of what is needed to fund research for a cure, subsequently lengthening the time to a cure.
- There is no cure for Cystic Fibrosis. But the “science” is almost in place for one to be developed.
- There are drugs in the pipeline that will GREATLY improve Eva’s quality of life – until a cure is available.
- We were hoping to tell you in this letter that Eva had just started one of the most promising new drugs – Trikafta- because it was to be approved for 6 to 12-year-olds by now. But Covid-19 came along and the research labs had to close for a while. They are open again now, thankfully, and we are hoping the approval will come in the 1st half of 2021. SEE LATE-BREAKING NEWS ABOVE!!! WHOOPEE!!! IF you have donated in previous years, THIS is what your $$ DID- Oh how we thank you!!!!!
- Eva’s lung infections which required hospitalizations this year damaged her lungs irreversibly. CFF is researching infection control and treatment because lung damage is ultimately not compatible with life.
- YOUR DONATION to the Cystic Fibrosis Foundation, through Eva’s Alliance is NEEDED for Eva to continue living a full and productive life AND so CF can stand for Cure Found!
1. Donate using a credit card or PayPal online OR
2. Mail a personal or business check PAYABLE TO: Cystic Fibrosis Foundation to me at: Annelle Tanner, 2710 Marye Street, Alexandria, LA 71301
We appreciate your wish to make a difference in the lives or people who need your support-through prayers and donations. Our motto is “Until it’s Done”- until there is a cure for ALL with Cystic Fibrosis, we will continue the research. What a great story in which to participate! Like polio and other diseases that now have effective treatments or prevention or cure.
ONE DAY CF will stand for Cure Found.
As Dr. Francis Collins, Director of the NIH National Institutes of Health, whose lab discovered the human genome- and CF gene- in 1989, opening the flood gates for life-saving research into CF, sang “our hopes unswayed ‘til the story of CF is history.”
You can hear him sing this during the National CF Conference in 2009 at https://www.youtube.com/watch?v=CbGG2_AjnP0
‘Til the story of CF is history INDEED!!! Thank you!