To All of Our Family, Friends and Loyal Supporters,
Wow! Our family needed a big hug in 2012 following Alexa and Presley’s CF diagnoses and we were not disappointed! We had such an amazing outpouring of support during our first Great Strides effort and it gave us such encouragement to know that our family and friends are right there beside us in our fight to find a cure for cystic fibrosis. Thank you!
Our team, Hall’n for CF, raised an astounding $19,057.44 and came in 4th place for the Nebraska Chapter of the Cystic Fibrosis Foundation. Our team is actually in print as a 2012 Top Team! We consider this a huge success story but we are keeping our eye on the prize – a cure for CF.
Cystic Fibrosis: What is it?
Cystic fibrosis is an inherited, chronic illness that primarily affects the lungs and digestive system due to abnormally thick and sticky mucus. This mucus clogs the lungs and leads to life-threatening lung infections, and obstructs the pancreas which stops natural enzymes from helping the body break down and absorb food. Currently, the median age of survival for a person with CF is 37.
Cystic Fibrosis: Alexa & Presley Hall
Alexa is seven years old and in 1st grade. She was diagnosed with CF at the age of six due to chronic sinus issues, but it brought clarity to a history of orbital cellulitis, stomach aches and slower weight gain. Fortunately, her lung function remains normal, her digestive function is unusually good, and Alexa has worked hard to gain weight so her Body Mass Index is consistently above the 50th percentile which makes her doctors happy. She has had her typical sinus issues this past fall and winter requiring antibiotics, but so far, no other major illnesses! Hand sanitizer is a dear friend of our family. Alexa has accepted her CF diagnosis astoundingly well and talks openly about it to family, friends and those at school.
It also has become so clear to us that Alexa’s delayed diagnosis brought us two very wonderful blessings: Noah and Presley. We are so very thankful for Noah’s negative test and we know that Presley’s blonde, curly locks and bright blues eyes were sent to us to brighten any difficult days that CF may bring our way.
After Presley’s birth in November 2011, she had a rough couple of months in the NICU due to her bowel obstruction and subsequent surgery. However, after several months of a slow appetite, projectile vomiting and a lot of stress, Presley finally began eating better and gaining weight! We can happily report that her doctors have no complaints with her current progress and we are thrilled. Presley just recently got her new “Vest” and it has been great for the entire family. Alexa now has a “Vest” companion and we are now free to play and interact with all of the kids during treatment time instead of being tied only to Presley. Although the “Vest” is a twice daily time commitment for both girls, it has truly restored some normalcy to our lives.
Cystic Fibrosis: Groundbreaking Research & Medical Breakthroughs!
Believe it – you can make a difference! The money raised by the CF Foundation is the reason that ~4% of the CF population now has their disease under control. Yes, you heard correctly. It has been one year since Kalydeco was approved by the FDA and many of the CF’ers that qualify for this new drug now test negative for the disease and are slowly eliminating some of their treatment regimen because of decreasing and disappearing symptoms. Truly amazing!
This research is improving and saving lives, but we must not leave behind those who still battle this disease, especially now that scientists have proven that the defective cells can be manipulated with medication to function properly. There are clinical trials underway today that could lead to the FDA approval of additional medications that will “fix” Alexa and Presley’s defective genes. It almost seems too good to be true but it isn’t. We are convinced that raising money for continued research will allow Alexa, Presley and thousands of others to live long and normal lives.
Do You Have a Charitable Cause? How Can You Help?
If you know us well, then you recognize that fundraising and soliciting donations from our friends and family is not something we take lightly. However, like any parent, we take our kids’ lives very seriously. We will work tirelessly to help fund additional research until it is no longer necessary – until a cure is found. We know that some of you may already have a charity that is near and dear to your heart, but for those of you that don’t already have a clear “cause”, please consider supporting our team. For every $1 raised, ~90 cents goes toward critical CF research, care and education. In a few years, we hope you will be looking back saying, “I helped cure CF. I helped add precious years to Alexa and Presley’s lives.”
So what can you do? You can donate to our Great Strides team, Hall’n for CF. Every. Dollar. Counts.
Are you on board to go further than a personal donation? You can join our Great Strides team and raise crucial dollars yourself on behalf of Hall’n for CF. Last year, we had several family members and dear friends willing to spread the word to their own family, friends, co-workers and employers. This was a key component of our team’s success and so beneficial to our fundraising efforts. Please share our story – forward our link!
You can donate and/or join our team, Hall’n for CF, by clicking on the yellow links at the top of this page.
Please also view a video on Alexa and Presley’s CF journey below:
In celebration of our team’s fundraising efforts, you may join us for the Great Strides walk on Saturday, May 4, 2013, at 10:30 a.m. at Aksarben Village – Stinson Park, in Omaha. This is a short, family-friendly walk and our team will have “Hall’n for CF” t-shirts available for our walkers. Breakfast and lunch are also provided.
We will always remember the devastation of finding out that the girls have cystic fibrosis but we pray every day that there will soon be a cure for CF and it will be the joy on that day that triumphs. Dream Big! Help make CF stand for “Cure Found!”
Love, Steve and Wendy Hall
Other CF Dreams:
For additional information on the success of CF research and Kalydeco, please feel free to read these testimonials:
Kalydeco Testimonial #1
Kalydeco Testimonial #2