Running NYC for Ella!
Many of you have reached out and asked about our annual Ella event, as it's that time of year again!! We've had an extra busy 2017 and really didn't have the mindset this year to pull off a full event, but you KNOW we wouldn't (and couldn't) let the year pass by without honoring our dedication to ensuring that Ella live life full by doing SOMEthing. So this year, even though I said I wouldn't do it again, I'm lacing up my sneakers to run the TCS New York City Marathon for Ella and all of her friends with PWS.
To be honest, in part 2017 was so busy and trying because we've reached another phase of life in PWS. Ella is now 5 years old, and in many ways a completely typical, amazing little kid. She just started kindergarten at our neighborhood public school. She is ROCKING her new routine which, in addition to school includes ballet and tap class, swimming lessons, and gymnastics! She's super busy, but loving getting to be involved in all of these social situations, learn, and make new friends! That said, this year we've seen lots of new characteristics typical of PWS creeping up and they've slowed us down and have made us have to work much harder just to get through regular-life-stuff. Of course, you know us. We won't give up or give in, we will only work harder, so that's what we're doing. In our day to day life, as well as in our commitment to the bigger picture.
We vowed when Ella was born, even before her diagnosis, that we would do WHATEVER we could to make a difference for her future. In the past five years it's become even bigger than Ella ... it's about the friends that we've made that have become family and their beautiful children living with PWS. It's about the incredibly strong siblings like Giuliana, whose lives have been dramatically changed with this diagnosis. It's about the research for all rare diseases, because with every stride our organization makes, we are helping countless others.
Over the past five years (this is our 6th fundraising season!!!), we have raised in excess of $1.5 Million dollars and directly impacted the research that is happening in the PWS field. When we first encountered this rare disorder there were NO drugs in clinical trials, and now there are close to 10. This means our hope is bigger than ever that there will be answers, but also, our stakes are as high as they've ever been. As Ella continues to grow and age, our challenges will continue to become greater and more severe.
I humbly ask you again this year to so generously donate to help us help Ella. I know that research wouldn't be where it is today if it weren't for YOU, OUR INCREDIBLE community. Our AMAZING family and friends and business associates and colleagues that have become the pillars on which are building our dreams. We can not thank you enough for your ongoing support and your endless generosity.