Take One Small Step With

Running NYC for Ella!

2017
$19,300 of $20,000 Raised
Return to 2017 TCS NYC Marathon- Team FPWR 2017

About

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. 

messages from the donors

    • "
    • Honored to be a part of the movement. Good Luck!!
    • Sal Rizzolo
    • "
    • We Love Ella!!!
    • Michael, ToniAnn, and Milania Jewel
    • "
    • We love you!!
    • The O'Hara Family
    • "
    • Frank and Dana, we are so proud of your endless hard work and dedication in support of PWS. Dana, Gods speed on Nov 5th, xoxo
    • Noreen and John Ferrante (aka Nonni and Poppy)
    • "
    • Go Ella!!!
    • Domingo Family
    • "
    • Go Ella! We love you!
    • Sonia Nangia
    • "
    • run for your dreams!! go ella!! go dana&frank!!
    • holbrook in the house!!
    • "
    • Best of Luck reaching your goals. We're all rooting for you!
    • The Brandly Family
    • "
    • We love you all, never stop fighting!
    • Pliego / Gonzalez Family
    • "
    • Love you guys!
    • Jaime Weisman
    • "
    • Best of luck reaching your goals.
    • Christian Berio and David Ng
    • "
    • Good Luck Dana !!!
    • Joe B
    • "
    • Let's do it!
    • Anonymous
    • "
    • Taking the steps forward to help!
    • Ana Gonzalez
    • "
    • Thanks for being a voice!
    • Uncle Don & Aunt Jana
    • "
    • Go Dana
    • Unc T
    • "
    • Good luck tomorrow Dana! #runforElla
    • Jaime Weisman
    • "
    • Love you guys...
    • Grandma, Poppy, Aunt Mary
    • "
    • Go Dana GITTERDONE!!!!
    • Domenic F.
    • "
    • You’ve got this Dana!
    • Picca Family
    • "
    • Run for life
    • Uncle Richie R
    • "
    • You are an amazing mom, pioneer and wonder woman! Youve’ve Got This!!!
    • Michelle Hylan
    • "
    • We love you all to the moon and back.❤️
    • Cousin Mary, Lexie and Kevin
    • "
    • xoxo
    • gail ruffino
    • "
    • Love you all, Run Dana Run good luck
    • The Reina's
    • "
    • Wishing Ella and your family much success in kicking PWS's butt
    • Jamilyn and Jay DiMucci
    • "
    • Best of Luck Dana.
    • The Aspuru Family
    • "
    • God Bless Ella !
    • Michael C.
    • "
    • Go Dana!! So proud of our little Bean, she is growing up too fast!
    • Aunt Mary & TJ
    • "
    • Thanks for all you do for Ella & FPWR. Good luck on the race. I love your family :)
    • Aunt Allie
    • "
    • Go, Dana!!
    • Bob and Sharon Griebe
    • "
    • We love you Ella!
    • The Valente's
    • "
    • Peace love Ella!
    • Dominique C.
    • "
    • Crush it, girl!
    • Jennifer W.
    • "
    • We are soooo proud of you Dana! Love you so much, go get em!!!
    • Uncle Joe & Anjelica
    • "
    • Good luck guys!
    • Mortgage Maestro Marc
    • "
    • You are amazing Ella!!
    • Brayden,Presley,Nixon
    • "
    • Go Dana!
    • Elizabeth C.
    • "
    • Great goal!! Go for it!!
    • David C.
    • "
    • xoxo
    • Barbara Scafiddi
    • "
    • Good luck Dana! Love you guys xox
    • The Tomas family
    • "
    • #Ellastrong #Ellasuperhero #Ellaprincess
    • Mary Grabow
    • "
    • Xoxoxo
    • Nicole Virgilio
    • "
    • Good luck Dana!
    • Bertucci Family
    • "
    • So proud of Ella
    • Jean Andersen
    • "
    • We wish you the best on your run....your strength is inspiring!!! Love these kids and will do anything for them!!!!
    • Thalia and melissa frade
    • "
    • Kick butt!
    • Jason Gloss
    • "
    • Team Emma loves Team Ella! Wishing you a great race!!
    • Team Emma

How Are We Doing?

2nd Place

$19,300 raised
97% complete towards our goal of $20,000
Don't want to donate online? Fill out our form and mail in your donation. Download Now

thank you donors

    • Sal Rizzolo
    • $1,500
    • Michael, ToniAnn, and Milania Jewel
    • $1,000
    • The O\'Hara Family
    • $1,000
    • Noreen and John Ferrante (aka Nonni and Poppy)
    • $1,000
    • Domingo Family
    • $1,000
    • Sonia Nangia
    • $1,000
    • holbrook in the house!!
    • $1,000
    • Brad A.
    • $1,000
    • The Brandly Family
    • $1,000
    • Pliego / Gonzalez Family
    • $1,000
    • Jaime Weisman
    • $500
    • Stella Schwegs
    • $500
    • Christian Berio and David Ng
    • $500
    • Aunt Kathy
    • $300
    • Joe B
    • $300
    • Anonymous
    • $300
    • Pop and Karin McKenna
    • $300
    • Ana Gonzalez
    • $250
    • Uncle Don & Aunt Jana
    • $250
    • Anonymous
    • $250
    • Unc T
    • $250
    • Jaime Weisman
    • $250
    • Grandma, Poppy, Aunt Mary
    • $250
    • Domenic F.
    • $200
    • Picca Family
    • $200
    • Goldberg Family
    • $200
    • Picca Family
    • $200
    • Uncle Richie R
    • $200
    • Michelle Hylan
    • $200
    • Cousin Mary, Lexie and Kevin
    • $200
    • Laura and Bill Christie
    • $200
    • Paul C.
    • $105
    • gail ruffino
    • $100
    • Katie Berbenich
    • $100
    • The Reina\'s
    • $100
    • Jamilyn and Jay DiMucci
    • $100
    • The Aspuru Family
    • $100
    • Michael C.
    • $100
    • Aunt Mary & TJ
    • $100
    • Aunt Allie
    • $100
    • Bob and Sharon Griebe
    • $100
    • Valerie Tuthill
    • $100
    • The Valente\'s
    • $100
    • Dominique C.
    • $100
    • Ivan B.
    • $100
    • Anonymous
    • $100
    • Jennifer W.
    • $100
    • John D.
    • $100
    • Howard G.
    • $100
    • Uncle Joe & Anjelica
    • $100
    • Mortgage Maestro Marc
    • $100
    • Brayden,Presley,Nixon
    • $100
    • The Nupp Family
    • $100
    • Elizabeth C.
    • $100
    • Anne Marie S.
    • $60
    • Anonymous
    • $50
    • The Lindstadt Family
    • $50
    • David C.
    • $50
    • Barbara Scafiddi
    • $50
    • The Tomas family
    • $50
    • Mary Grabow
    • $50
    • Nicole Virgilio
    • $50
    • Bertucci Family
    • $50
    • Dara Warshaw4155
    • $25
    • Anonymous
    • $25
    • Bruckbauer Family
    • $25
    • Jean Andersen
    • $25
    • Alison S.
    • $25
    • Anonymous
    • $25
    • Thalia and melissa frade
    • $25
    • Jason Gloss
    • $25
    • Team Emma
    • $20
    • Anonymous
    • $15

Running NYC for Ella!