There is NO CURE for CF, a genetic, "orphan disease" (affects less than 200,000 people), and funding support for research about it is severely limited. You can learn more about Eva and this our 8th year of raising funds in Dallas, Texas. https://www.facebook.com/GivingCFtheBoot/
This year, our 8-year-old granddaughter faced something no child should have to face: her mortality. During our local Great Strides walk a few months ago, she heard the emcee announce an award that was being given in the name of a local girl who had Cystic Fibrosis and died several years ago while awaiting a lung transplant. She listened, waited several minutes, then asked her mom: “What happened to that girl with my disease?” Her mom answered honestly that she died. When Eva asked how old she was, her mom told her that the girl was LOTS of years older. Eva looked her mom directly in the eyes and asked “How.old.was.she?” With a heavy heart, her mom looked directly back at her and quietly answered, “She was 29.” Eva was quiet for several minutes; then she ran off to start the CFF walk with her friend. (Picture included)
WE NEED A CURE!!
2018-2019 highlights include:
AWARD: Outstanding Great Strides Partner in Northeast Texas Award for raising over $100,000 for Cystic Fibrosis research since Sara Kay Tanner Bostelmann, Martin’s baby sister, (“of the Cheneyville Tanners” as they say around here formed Eva’s Alliance.
ACTIVITIES: Swim team, basketball, trampoline, read, PLAY (NOT practice piano, sing in church’s children’s choir, play with dog Dash and dolls, board games, imagine/pretend LOTS
Susan attended Cystic Fibrosis Foundation’s National Association Cystic Fibrosis Conference as a member/leader on the Dallas Children’s CF Center’s Parent Advisory Board
UNEXPECTED: storm, producing power outage provided “opportunity” to find alternate way to do treatment
CLINIC: Most recent quarterly check-up
o NOT good: BMI lower than 25%ile
o Good: Lung capacity O2 sat 99%, PFT 117%, CLOSE TO PESONAL BEST OF 121%
o GREAT!: Hopped up on exam table, held arm out & watched as blood drawn, smiling all the while…exhibiting HUGE courage, building and using personal tools to face and move into and through excruciatingly-terrifying experiences
March: During beautiful labyrinth build by friends, Eva’s name was placed in the center of the new labyrinth at The (new) Children’s Museum in New Orleans, City Park. The center-where One encounters and communicates with The Holy Thou, the Great Healer. She is forever in His arms.
March: Martin returned to Cystic Fibrosis Foundation’s March on the Hill, meeting with ALL Louisiana congressmen, HUGE plus using same MEDICAL language with the 2 physicians, 1 senator and 1 representative, sharing how VITAL that our health care delivery system provide adequate coverage for pre-existing conditions
April: 8th Give CF the Boot Family Music Show and Silent Auction as Eva’s Alliance major fundraiser; This was the last year for this event as Eva has decided she is uncomfortable being in the spotlight for surviving and thriving while living with CF, and we will respect and honor that request.
April 5: Eva took her 1st CFTR modulator Orkambi, after Susan consulted with Cystic Fibdoaia Foundation Senior Vice President of Therapeutics Development Dr. Michael Boyle who recommended her starting it-based on evidence of Eva’s lung damage.She is in the process of requesting an “upgrade” to the most recently-FDA approved CFTR modulator Symdeko. These will not CURE the CF-new science of gene editing is coming, thanks to your donations. The modulators will hopefully help with salt exchange at the cellular level, improve lung function, slow lung damage, and decrease infections.
June: PLAY with cousins, aunts & uncles from Colorado, Seattle, Wisconsin, and eastern North Carolina during our 50th wedding anniversary celebration
HELP US KEEP THE GOOD TIMES ROLLING:
WE NEED A CURE.
THANKS for donating and being a part of our race/fast walk to a cure!
Ways to participate:
• Join our team and donate to Eva’s Alliance http://fightcf.cff.org/goto/annelletanner
• Join our team and register to WALK with us on September 28, 2019, at Menard High School, Alexandria, LA.
• Become a SPONSOR for our Great Strides walk-starting at $100. (GREAT way to get your business in the public eye!). Contact me at firstname.lastname@example.org for more information.
Please keep Eva and family AND THE RESEARCHERS in your prayers.
LATE BREAKING NEWS: As of yesterday, July 22, 2019, a new drug application was submitted to the FDA for priority review of the Triple-Combination Therapy for individuals with CF who have one F508del genetic mutation and one minimal function mutation. Previous drugs are only for folks with TWO F508del genetic mutations, like Eva. This follows results of statistically significant improvement in lung function among participants in 2 global clinical trials. If approved, this means the drug would be available to adults in no more than 8 months; approval for children 6 to 12 years of age would come several months/year later. Though EXTREMELY helpful and hopeful, too many folks with Cystic Fibrosis are still dying too young.
Until it’s done…until ALL genetic mutations are covered…
WE NEED A CURE!