BENEFITING: CYSTIC FIBROSIS FOUNDATION
ORGANIZER: CYSTIC FIBROSIS FOUNDATION
EVENT: Pittsburgh Marathon 2016
EVENT DATE: May 01, 2016
When we found out our new little granddaughter -to -be had Cystic Fibrosis three years ago we were all in shock. There was no history of anyone else we know in either family so how could this possibly happen? But since she was born she has been such a beautiful light in our lives. She was born to absolutely amazing parents who do EVERYTHING possible to do what she needs and have dedicated their lives to fundraisers to fund CF research for Natalie and so many others affected. It is a rare disease so there is no government funding. The CF foundation is the backbone of fundraising to provide research for a cure and hopefully SOON! It's absolutely heartbreaking to even think about a shortened lifespan in the 30's for Natalie. We just know she is destined for great things and will FAR surpass this age!
Natalie must have breathing treatments and chest vibration therapy twice a day plus take 7-8 enzymes with every meal to help her body digest and absorb food. She is SO proud because instead of on a spoon with applesauce she can now swallow the enzymes all by herself "Because I'm 3!" She has done very well but does get several infections every year for which she needs antibiotics. This past January she was hospitalized for the first time with IV antibiotics and discharged with a PICC line through which her parents learned to give her IV antibiotics at home so she could be discharged sooner. This was a very stressful time for everyone.
I just attended a conference on CF which addressed the life of an adult with CF. It was sad to hear of all the challenges they face. This disease affects SO many other organs and they can never stop these treatments and must incorporate them into their life. But despite all of this so many are still thriving and living a full and happy life. We want this so much for Natalie and want the research to continue. They are so close to a cure! We pray that one is found to help Natalie. In the last few years new drugs have become available. Orkambi is the newest but has only been studied on over 12 year olds so Natalie is not eligible yet. It works on the missing or defective CFTR proteins which don't reach the cell's surface and it "opens the gate" to allow chloride ions to pass in and out of the cells to certain organs. There are many other drugs in the pipeline coming up.
As a family we have embraced the cause and many family members participate in the Marathon and Great Strides walk in May, the Cycle for Life in September and Lindsey and Doug have done the Extreme 26 mile Hike in October all to raise money for CF research. Last year my amazing husband Ray ran his first marathon (3 days after being very sick) to help Natalie and so many others with CF. He was such an inspiration as I watched him train in the worst possible conditions. Even after several falls and no matter WHAT the weather, he kept going! Although that is something I could never do I have decided to participate in the Relay Team this year. I had really hoped I would be able to jog but my 61 year old body does NOT like it so I will try to jog/walk the last leg of the relay to be part of this amazing team!
If anyone could find it in their hearts to contribute any amount of money to the cause we would all be so grateful! Thank you so much for reading this. Natalie is such a special, happy, beautiful child. She has brought us all so much joy. Watching her happy and enthusiastic and determined personality makes me so hopeful she will beat this and one day be CURED!!!
CYSTIC FIBROSIS FOUNDATION wrote -
Help Us Find a Cure.
Our Run to Cure CF team in Pittsburgh continues to grow each year, as do our research efforts and the progress we’ve made in the search for a cure. Real progress toward a cure has been made, but the lives of young people are still cut far too short. Won’t you join us in continuing the search for a cure? Accept the challenge today and help add tomorrows to the lives of those living with cystic fibrosis by registering to run or making a donation to one of our dedicated team members!
We've made incredible progress in the fight against cystic fibrosis, but we still need to strive to cross that finish line and find a cure!
What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 45% of the CF patient population is age 18 or older.
The predicted median age of survival for a person with CF is in the late 30s.
The Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters — patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.
Learn more about Cystic Fibrosis and our chapter: http://wpa.cff.org
Learn more about our Run to Cure CF Program at: http://wpa.cff.org/runtocureCF
$100 - Kid's Marathon
$200 - 5K
$1,500 - Relay Team
$400 - Half Marathon
$500 - Full Marathon
Fundraising minimums must be met by April 29, 2015. Once you register through Team CF on Crowdrise, within one week you will receive a confirmation e-mail from the Pittsburgh Marathon verifying your registration.
Don't think you can meet your fundraising minimum? Contact Lauren DiMaria at firstname.lastname@example.org or 412-321-4422 to set up your fundraising plan and guarantee your race spot today!
All Run to Cure CF team members will receive*
Run to Cure CF Gender Specific Performance Tee
Volunteer Led Group Training Runs
Coach provided Training Plans and Tips