September 2015
Childhood Cancer Awareness Month
Our Annual Appeal Letter 

Dear Friends,
 
My name is Michelle Sims, and I would like to share the story of my amazing daughter, Sydney Sims. Sydney was diagnosed with Stage IV Neuroblastoma in January of 2004.  I will never forget the awful day the doctors told me that my baby girl had cancer.  She was only seven years old.  My husband and I researched the best place to take her for treatment, and the answer was obvious - Memorial Sloan Kettering Cancer Center (MSKCC).
 
Over the course of five and a half years, Sydney battled the disease.  She had countless rounds of chemotherapy and radiation.  It was increasingly difficult for her poor body to recover after each round and she needed blood transfusions and platelet transfusions to keep her alive.  She was involved in several clinical trials with 3-F8 Antibodies.  She had a total of three relapses and two major surgeries.  Although the survival rates for children with relapsed neuroblastoma are dismal, Sydney never gave up. In July of 2009, Sydney had no evidence of disease (NED) and was offered a groundbreaking experimental treatment known as the Neuroblastoma Vaccine.  Sydney was the first patient to receive the vaccine.  I am so happy to say that Sydney won her battle against Neuroblastoma and is a cancer survivor.  She has now been cancer-free for six years.
 
Today, Sydney is a sophomore at the University of Tampa, Honor's Program, studying Marine Biology.  She is a happy, healthy, young woman, ready to conquer the world.  We know how blessed we are to have our happy ending and it wouldn't have been possible without the amazing doctors and clinical trials at MSKCC.  The Band of Parents (BOP) plays a huge role in raising the funds for these trials.  In fact, BOP is now funding a possible game-changing trial that will provide the vaccine to more children, providing even more hope.  I remember when the Band was first established.  My husband, Kevin, and five other amazing fathers of children battling Neuroblastoma rode their bicycles across the country to raise money for BOP.  They called the ride "The Loneliest Road."   These amazing, selfless men raised hundreds of thousands of dollars for BOP, with the hope of finding a cure for their children. 
 
We need more success stories and happy endings. In honor of Childhood Cancer Awareness Month, please BAND together to continue to fund the Band of Parents and raise money for new treatments for our children who are battling for their lives, and to end this horrific disease.

 
With Hope,
    
Michelle Sims, 
Mother to Sydney, Neuroblastoma Warrior and Survivor
BOP FUNDS AN EXCITING NEW TRIAL: FRONT-LINE VACCINE AT MSKCC

We are thrilled to share with  you the newest,  innovative  trial  that the  Band of Parents has  agreed to fund:  Dr. Brian Kushner's Vaccine Trial at Memorial Sloan-Kettering Cancer Center (MSKCC).

This new  vaccine  trial  ( Bivalent Vaccine Plus  Beta-Glucan for High- Risk Neuroblastoma in  First Remission)  entails giving the NB  vaccine  frontline - in children who have NOT relapsed. Our goal is to prevent relapse of high-risk NB patients in 1st remission after completion of standard of care, using the bivalent vaccine plus β-glucan to augment cytotoxicity by leukocytes.   This could prove to be a groundbreaking trial with the potential to change the treatment of neuroblastoma. The results have been outstanding for the relapsed children - imagine the same results for first line therapy 
 
The Band of Parents is also currently reviewing other potential funding possibilities, all with the hope of bringing groundbreaking new treatments to our children as quickly as possible.  It is only with your support, and the success of our fundraising events, that the Band of Parents is able to fund innovative treatments for our children.  

As always, please feel free to reach out to the Band with any questions, concerns or new ideas you might have. Development Director, Kim Roginski, is available to  assist. You can reach her at 
kimroginskibop@gmail.com  or 917- 409-6567.

Together, as we to fight for a cure, we are bound by hope.

September is Childhood Cancer Awareness Month. Go Gold!
Join the Young Professionals Board

The Band of Parents is currently seeking young professionals to both lead and participate in our Young Professionals Board (YPB).  The mission of this Board will be to: 
  • Support the organization in its fundraising goals,
  • Provide support to families, and
  • Raise awareness of our organization, pediatric cancer and the need for research.
Some of the activities and events that we would look to this Board to create and/or organize include:
  • Rooftop Party at PH-D
  • Grassroots Fundraising Support
  • Social Media Awareness
  • Family Support Projects
  • Attend Band of Parents Events

For more information or if you would like to join the Band of Parents' Young Professionals Board, please reach out to Chairman, Marc Winthrop, today at winthrop2@gmail.coor 917-592-2103.  This exciting opportunity will help the Band in its mission to find a cure for Neuroblastoma, as well as advancing your own professional and personal development. 

Cocktails for a Cure at the Dream Hotel's PH-D

On July 27, the Band of Parents held the  Cocktails for a Cure  benefit at PH-D, the rooftop lounge at the Dream Hotel Downtown. Over 100 guests were treated to three hours of drinks and hors d'ouevres.  The night raised over  $5,000 for the Band of Parents - 100% of which will go directly towards Neuroblastoma research.

The Band of Parents would like to thank all of the staff at the Dream Downtown and the PH-D Rooftop Lounge and a very special thank you to the Tepperberg family for their generous and continued support!

Together we will raise spirits, awareness and funds for the love of our children.

In order to further strengthen the vital support component of the Band of Parents, we are also promoting a private group on Facebook, called Sloan Kettering Neuroblastoma Families, which you can find here:
https://www.facebook.com/groups/121710761507105/

Please join the conversation there for another place for parents in and out of treatment to share information and be a support system for one another.   

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Band of Parents
PO Box 335
Dewittville, NY14728