Kate Ettingoff wrote -
EVENT DATE: May 04, 2019
Join us at the Inaugural Annual Philadelphia Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk!
Join us Saturday, May 4, 2019! The walk begins and ends on the ground floor of 100 South Independence Blvd. W, Philadelphia, PA 19106 (adjacent to the Independence Beer Garden). There is a parking garage in the same building who has given us $10 off coupons we will hand out at the event-the entrance to the garage is on Ranstead between 6th and 7th. That will take the parking cost to $18-you could also always look for street parking if you prefer.
Registration opens 4:00 PM (on-site registration available).
Walk Festivities begin 5:00 PM.
This event is free and open to the public.
Contact CureJMWalk@gmail.com for more information.
Meet Kaia, our awesome 5 year old daughter! If you passed her on the street you would have no idea that everyday of her life she's fighting a rare and life threatening disease. The disease is an incurable autoimmune disease called juvenile dermatomyositis and she's been battling it since the summer of 2016. This disease, which for her is triggered by even normal amounts of sun exposure, attacks her skin and muscles, and if left un-checked it would continue to affect the other organs of the body, likely resulting in lifelong crippling or death. Thankfully a slew of heavy duty medicines (like weekly chemotherapy, high dose steroids, IVIG, and other daily oral medicines) keep her disease in check. BUT, those introduce a whole array of other problems that a 5 year old shouldn't have to be dealing with.
It all started with a few small rashes in the summer of 2017 that just kept spreading no matter what we put on them. Little did we know that the real concern was what was happening underneath the skin-her muscles were getting more and more inflamed until ultimately the MRI results at diagnosis left the doctor stunned that she was walking normally. Which, most kids don't by then. But we were lucky and she was compensating well. Due to the rarity of the disease, it took nearly five months for a doctor to correctly diagnose her-despite seeing many in efforts to do just that. So while we try to rasie funds to fund research for a cure we're simultaneously spreading awareness which will, and has, cut down on the average diagnosis time for our kids-which is the single biggest factor in the child's outcome.
Despite being only 5 years old and all of 40 pounds, she is SUCH a trooper through all of the shots, the IVs, the visits to CHoP, and the daily stomach aches. BUT, the sunscreen multiple times a day really drives her (and her mother) insane!! The disease is triggered and exacerbated by the sun so that she requires sunscreen and hats everyday of her life. In the sweltering summer heat you'll usually find her wearing a jacket over her cute t shirts and dresses to keep her arms protected from the sun and in the winter you'll wonder why that little girl's mom is smothering her in sunscreen and a sunhat. I've gotten used to the looks but it pains me that even after all of the treatments-even on an off day where she ONLY has to swallow a few pills rather than shots or IV's-she's still not allowed to forget about her disease for a single day of her life. One miniature battle I find myself fighting daily is encouraging her and those around her to NOT discourage her from going outside and playing because it means she has to put on sunscreen. It is SO important to me that she have as normal a childhood as possible! And so far, she does. She loves dance, teeball, swimming, and just playing all the time.
So how can you help you ask? :) We have our first HUGE annual event coming up!! This coming May will be our very first annual Walk Strong to Cure JM Philadelphia!! My husband and I started the Philadelphia chapter of Cure JM pretty immediately after she was diagnosed and over the past couple of years have held events for our families including our annual fall educational seminar at CHoP. And we are SO excited to finally be running our first major community fundraiser! We have so many wonderful friends and families in the area that offer to help in any way possible, and now is the time!! Please come out and join us, share our event and our story, and where possible donate to help us find a cure! If you own or work for a company that would be interested in donating $250 or more to become a sponsor on our signs and t-shirts, please contact me!
As a member of the Cure JM National Leadership Counsel I am well educated and very excited about the specific research projects Cure JM is funding to help find safer treatments for our children. One of our larger projects that is working on determining the gene or genes that may cause JM is actually being done here at CHoP as we speak and all of Kaia's grandparents were thrilled to donate their blood for the project at the National Conference in DC this past weekend.
All proceeds benefit Cure JM Foundation, a 501(c)(3) nonprofit organization with the mission to find a cure and better treatments for Juvenile Myositis and improve the lives of families affected by JM.
Every donation goes straight to Cure JM, and together Cure JM friends and families have raised over $12 million for JM research.
Can we count on you to help today?