2020 WALT DISNEY WORLD® Marathon Weekend presented by Cigna

#teamconnor
#teamconnor

Team Connor

walt disney world MARATHON weekend, HERE WE COME!
Join #TeamConnor and the A-T CureTeam as we take over Walt Disney World in January 2020!
Thank you for visiting our fundraising page! We're excited to bring back #TeamConnor for the 2020 Disney Marathon weekend and hope you will join us to run for Connor and all children/young adults with Ataxia Telangiectasia. 
Since Connor's diagnosis in 2009, we've experienced many highs and thankfully only a few lows... unfortunetly, those lows are becoming more and more frequent as his A-T is progressing.
Within the last year, Connor participated in the worlds 1st ever phase 3 clinical trial which was very exciting and did provide physical improvement, however, it reeked havic on his emotional & mental state, caused elevated immune function concerns and reduced his bone density so we had to stop. His balance and gait have become more impaired, muscular tremors more frequent, speech more slurred and he's developed sleep apnea... all side effects of the progressive neuro-degeneration of A-T. To offset, Connor now uses a power chair over 75% of his day and needs assistance in almost all areas of daily living including schooling, independant eating and self care. He also sleeps with a CPAP for continued oxygen throughout the night, maintains a variety of medications to boost his immune and bone health and meets with physcial, speech and swallow therapists weekly who continually introduce new techniques for him to maintain flexibilty, articulation and promote safety. 
It's been a harsh reality as he realizes more and more what A-T is and is doing to his body, all the while he's congnitively a 12 year old boy wanting nothing more than to be a normal "tween"... fitting in with his peers and participating in all they do. There is nothing more heart-breaking as parents then to see this and not be able to "fix' it!
Thankfully, while there are the bad days, Connor maintains a positive #cantstopwontstop attitude and we are constantly 1. finding ways to show him a world of adventure and 2. speading awareness and raising funds towards a CURE and today, more than ever, WE HAVE TANGIBLE HOPE!
Over the last year, scientific advances have made personalized genetic therapy a possibiltiy and the ATCP is leading the industry with scheduled testing of such a treatment aimed at curing 1 A-T child... THIS YEAR! WHEN successful, this will open many more doors for funding, allowing more exporation and treatment options... it's all EXTREMELY exciting and can not come soon enough as time is not on Connor's side! 
In effort to do our part, we're fundraising from now (April) until December 2019 and will run in January 2020 at the Disney Marathon weekend alongside other A-T family and friends, will you join us? 
Register by clicking the "join" button to run with #TeamConnor and all A-T #differencemakers!
Sincerely, 
#TeamConnor - NIck and Samantha Dzembo
Race options:
Walt Disney World® Marathon
Walt Disney World® Half Marathon
Walt Disney World® 10K
Walt Disney World® 5K
Goofy's Race and a Half Challenge (Half & Full)
Dopey Challenge (all 4 races)
(By joining you commit to a fundraising minimum of $600,per race. Registration for the full & half marathons and challenge runs are open now through the #ATCureTeam. * 5K and 10K spots are very limited as Disney is now sold out... please message sdzembo@gmail.com for assistance to secure your spot!)
Team benefits:
*Personalized training messages from Connor himself!
Guaranteed race entry
A-T CureTeam running shirt & A-T medal
Complimentary entry to the A-T CureTeam Pasta Dinner Party (family friendly!)
Personal fundraising web page
runDisney's race shirt, goody bag, and medal
Specially priced room rates at a Walt Disney World® Resort (Group hotel TBD)
(Visit http://give.atcp.org for full event details)

WHAT IS A-T?

Imagine a disease that combines the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiencies, and cancer. Children with A-T are usually confined to wheelchairs by age 10 and often do not survive their teens. Because A-T is a multi-system disease, scientists believe that A-T research will help more prevalent diseases such as Alzheimer’s, Parkinson’s, AIDS, and cancer.  

Ataxia Telangiectasia Quick Facts:
• There are only approximately 600 children in the USA diagnosed with A-T
• A-T is neuro-degenerative and progressive, similar to ALS
• A-T encompasses symptoms of Muscular Sclerosis, Muscular Dystrophy, Parkinson’s and immune deficiency
• Children with A-T are 1000% more at risk for blood cancer than their peers and suffer from chronic respiratory illnesses due to their low immunity
• A-T is radio-sensitive making cancer extremely difficult to treat
• A-T is considered an Orphan Disease receiving little to no Federal/pharmaceutical funding for research
• A-T children typically need assistance of a wheelchair by 8-10 years old
• The life expectancy of a child with A-T is late teens to mid-20’s
• There is current no formal treatment and no cure

 
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