Meet Katie. She is an energetic, fun-loving, care-free bundle of awesomeness. When she grows up, she wants to be a real princess.
On September 23, 2016, the inspiration for Katie’s Krusaders blossomed when, at 3 years old, she was diagnosed with McCune-Albright Syndrome (or MAS), a chronic illness caused by a non-inherited genetic mutation on GNAS1, on the long leg of the chromosome, causing her symptoms of: an abnormal birthmark (Café Au Lait spot); fibrous dysplasia (weak spots within her bones where healthy, solid bone has been absorbed and replaced by spongy lesions); and precocious puberty (breast development, estrogen-producing ovarian cysts, etc.).
The only thing preventing this disease from becoming exponentially worse? A breast cancer drug for postmenopausal women, which is used to subdue the estrogen-related symptoms for the next six years, until she reaches the age of natural puberty. That should not have been, nor should it continue to be our only option.
MAS is what is known in the medical world as an “orphan disease”, meaning there is no known treatment or cure. The time for breakthroughs is NOW. We are on the cusp of life-changing discoveries for children in need of treatment of MAS and many other devastating diseases. CHOP is transforming the well-being of children and creating healthier communities throughout Philadelphia and across the world. We are raising money because we want to help make today’s innovative ideas, tomorrow’s realities, whether that is helping Katie today or another family facing a life-changing diagnosis in the future.
We have been blessed with an incredible medical team at CHOP, and the prayers and support of family and friends. For the month of May we are participating in Children's Hospital of Philadelphia’s Daisy Day 31-Day Challenge! Team members have pledged to walk, jog or run for 31 days to support cutting-edge research and care at CHOP!
How You Can Help Consider supporting us by JOINING OUR TEAM and/or making a tax-deductible donation for research and care at CHOP. Last year our incredible family and friends gave $2,000 for the Department of Endocrinology at CHOP. This year, we set the goal at a very attainable $2,500 and are looking to expand our team & fundraising power - the beauty of the 31-Day Challenge is that you do it on your own time and at your own pace!
**NEW FOR 2018 - be sure to join us at the Isaac's in Lititz on Tuesday, May 1, 2018 for a fundraising "night" between the hours of 10:00AM-9:00PM where 25% of your purchase will be donated to CHOP Foundation. Contact Anne, or any team member for more information and the flyer to hand in to your server or cashier**
We are getting SO very close to a viable treatment for MAS, please support our team so we can make that medical miracle a reality.
THANK YOU for your support! Together we can make amazing things happen!