HISTORY

In 2007, a group of families asked the head of the Neuroblastoma Program at Memorial Sloan Kettering, Dr. Nai-Kong Cheung, what they could do to help their children. He said there is a severe lack of funding for research and that better treatments are on the horizon, but can only come to fruition with more research.

 

At that moment, our founding members realized they could make a difference and a short time later, about 100 families of children in treatment for Neuroblastoma came together to form The Band of Parents. We are from all walks of life and share the common bond of fighting this disease and the optimism that cures are out there just waiting to be found.

 

 

 

 

MISSION

The Band of Parents is a member-based nonprofit organization with the goal of funding new therapies for Neuroblastoma. Our mission is to seek projects that have already been examined in the lab and are in need of assistance to rapidly move into a patient population. Our main focus is at Memorial Sloan-Kettering Cancer Center, however, at the discretion of the Board of Directors, Band of Parents will fund any project which is consistent with our mission at any institution and subject to our project criteria as defined in our By-laws.

 

In addition, we will support our members through our children’s battle with Neuroblastoma. Together, we are Bound by Hope that a cure is out there and we want to make sure a cure is found for ALL Children facing this disease.

 

 

THE BAND OF PARENTS BOARD OF DIRECTORS

Jill Ostrager-Cohen, MD, New Rochelle, NY

President

 

Jill works for Mount Sinai Associates in Internal Medicine. She has been in private practice on the Upper West side of Manhattan for the past 18 years serving a diverse population of patients. She serves on the staff of Mount Sinai Medical Center as a voluntary attending and is a Clinical Instructor in the Medical School.

 

Jill graduated from Stanford University with a degree in Human Biology. She received her medical degree from Albany Medical College in 1993 and completed her internship and residency in Internal Medicine at Mount Sinai Medical Center in 1996. She spent an additional year serving in the position of Chief Resident of her program. After completing her training, she joined the practice where she currently works.

 

Jill resides in New Rochelle, NY with her husband Bruce. Bruce is an oncologic radiologist and the medical director of an outpatient center at Montefiore Medical Center. They have three sons, Lucas, Ethan and Andrew. Andrew was diagnosed with Stage 4 neuroblastoma in May 2010 at age 3 1/2. He completed his treatment at MSKCC in August of 2014.

 

 

Marc Winthrop, New York, NY

Chairman of the Board

 

Marc is a co-founder of Triangle Capital LLC, a middle market investment firm and has been an active investor, entrepreneur and financial advisor for over 20 years.  Prior to Triangle, Marc was a director in the technology investment banking group of Prudential Volpe where he was responsible for developing the next generation telecommunications investment banking practice.

 

Prior to Prudential, he was a Vice President at Advantage Capital Partners, a $750 million private equity fund where he held board and executive positions at seven portfolio companies and had primary responsibility for troubled portfolio company management.  Marc was also founder and president of a successful retail business in Florida and worked in the investment banking departments of Kidder Peabody and Salomon Smith Barney.

 

Marc is on the Board of Directors at Kehila Kedosha Janina Synagogue and Museum, a non-profit organization dedicated to preserving Romaniote culture and the Band of Parents, a non-profit dedicated to curing Neuroblastoma, a deadly pediatric cancer.  Marc has an MS and BS in Nuclear Engineering and Engineering Physics from the University of Wisconsin Madison. He is married to Susan and has three children, Talia, Jackson and Kaitlyn. Talia, age 11 was diagnosed with Neuroblastoma on February 14, 2007. She relapsed for the first time on September 18th, 2008, and again in 2010 and 2011. She is currently near a fourth remission and realizing success on a new experimental treatment not available even 2 years ago.

 

Francesca Demers, Bethel, CT

 

Francesca is 38 years old and lives in Connecticut with her husband Jeff, and her two sons Jack, now 10 and Brendan 2.  Jack was diagnosed with Neuroblastoma Stage 3, NMYC amplified NB when he was two years old in January of 2004. Jack has had several relapses over the years and has been in remission and NED since January 2011. Fran has battled alongside other board members in our efforts to get more treatment options for Neuroblastoma- she has seen both fantastic moments as well as horrors that no parent should ever have to know. In addition to being a full time parent to Jack and Bredan, Fran assists with many fundraisers providing creative and technical expertise to fellow Band of Parents members.

In Memorium: John K. Bartosz, Band of Parents Founder and Board Member

 

Yesterday, I lost a friend

 

The Band of Parents lost a founder and board member

 

Sarah lost a husband.

 

Annie and Tommy lost a Dad.

 

And the pediatric cancer community lost a leader, a champion and one of the most important people to influence the way the world sees the universe of pediatric cancer.

 

John Bartosz singlehandedly set up more pediatric cancer charities than any other attorney. He guided parents, families, and philanthropists of all kinds though the process and helped them join the battle. He sat on boards and gave mountains of solid advice. While actively helping run our own Band of Parents he started the amazing I Back Jack Foundation and Gold in September Charitable Trust with Sarah and Annie.  He not only helped with the legal aspects, but gave solid advice on how to do philanthropy right. He gave hope and guidance.

 

We often hear that no one is irreplaceable, but John Bartosz is irreplaceable to our pediatric cancer community.

 

John was my friend. We shared the horror and pain of losing the battle known as Neuroblastoma as well as the passion to dedicate our lives to making a change so other parents never have to suffer the same. John was one of the most keenly knowledgeable lay people in the world of Neuroblastoma and carried the bitter sweet knowledge, like me, that if diagnosed today our babies may survive.

 

John smiled often, always had a sense of humor mixed with great compassion for his fellow human being.  He helped me and others survive an unbearable loss and worked tirelessly to lessen the chance that others suffer the same.

 

John’s passing won’t be on the cover of People or Time magazine, but it should. John defined what it means to be a great man. Loving, compassionate, a great father and fried, a husband, a pioneer, unselfish, a leader, a founder, our founder.

 

My friend, John Bartosz.  I miss you already.

 

Marc Winthrop

Chairman, The Band of Parents

Father to Talia (dx 2/14/07), Jackson and Kate

 

 

Caryn Franca, Virginia

 

Caryn was the President of the Band of Parents from 2009 to 2012. She is a long term successful entrepreneur and is currently the owner of Total Potential LLC. Over the course of her career, Caryn has parlayed her background in education into two successful businesses.

 

After a two year coach training program in the late 90’s, she partnered with a corporate training company to do strategic planning and small business coaching. She also had a private life coaching practice for 4 years. The other arm of her business is sales and training for Shaklee Corporation.  Since 1994 she has run leadership seminars, and developed a strong customer base selling wellness products. After her son was diagnosed at age 15 with stage 4 Neuroblastoma, Caryn let go of her coaching business.  Her son Nicholas Toms Franca lost his battle with Neuroblastoma in May 2011 at the age of 21. Caryn has started an angel parent group to provide support and comfort to families who have lost a child to cancer.

Tani Sanghvi, MD, New York, NY

 

Tani Sanghvi is a practicing obstetrician/  
gynecologist in New York City. She has been in private practice since 1998 after completing her residency in Obstetrics and Gynecology at Albert Einstein School of Medicine. Tani graduated summa cum laude from Amherst College in 1989 with a degree in French Literature followed by a year in Dijon, France teaching at the Universite de Bourgognae. In 1994, she graduated from Tufts University School of Medicine with a joint MD/MPH (Master's in Public Health).

 

Tani 's nephew, Amit, was diagnosed with stage IV Neuroblastoma in 2002 at age 2. After all conventional therapies, including a stem cell transplant, failed to eradicate his disease, he came to Memorial Sloan Kettering. Now, Amit, age 14, remains free of the disease and is a thriving teenager.

 

Tani joined Band of Parents in 2011, co-chairing the Band's first annual benefit in 2012 and its second annual benefit in 2013.

 

 

Mark Unger, Bridgeport, CT

Recording Secretary

 

Mark Unger is the President of Unger Enterprises, and General Manager of Unger Germany, Unger UK, and Unger France. He oversees all aspects of the Unger Professional Products globally, including sales, marketing, finance, research and development, production and quality.

 

Mark was born in Germany where he lived for the first 12 years of his life before moving to Connecticut. He is active in numerous industry associations and has served as the international director and eastern regional director on the International Sanitary Supply Association (ISSA) board of directors and served on the International Window Cleaner's Association (IWCA) board of directors. He is on the board of directors of Make A Wish of Connecticut where he served as Chairman. He earned a bachelor of science from Babson College and currently resides in Connecticut with his wife, Mary Ellen and his two sons, Harry and Louis. He enjoys fishing, snowmobiling and traveling.

 

At age three, Mark’s son Louis was diagnosed with Stage 4 Neuroblastoma. He battled this treacherous cancer for five years with the leadership of the Neuroblastoma team at MSKCC. After relapsing with the cancer in his brain, the incredible team of doctors developed a new treatment protocol that cured him. Today, Louis is a healthy teenager who loves to ski, fish and act.

 

Ken Lynch, Granite Bay, CA

 

Ken is a retired software executive who helped grow and sell two companies. He graduated from Cal Poly, San Luis Obispo in 1981 with a degree in Business.  Ken  enjoys traveling, baseball, grilling and spending time with his large group of friends and family.  His son Nick was diagnosed with Stage IV Neuroblastoma in May of 2006.  Ken and his wife Carolyn were told that the tumor was inoperable and that the disease was fatal.  With that news, they went crazy seeking other treatment options and fortunately found that better options were available.  They picked up the family and moved to New York City so that Nick could be treated at MSKCC.  The disease was treated and the "inoperable" tumor was removed by the great Dr. LaQuaglia at MSKCC.  Nick has been NED since the surgery in August of 2006 and he has been off treatment since October 2007. Nick is now 17 and a Senior in High School.  He loves to fish, drive around in his huge F-150 and build model drones.  He won four Bass Fishing tournaments in 2015 and can be found on one of the many local lakes just about every day.  He is the youngest of four children. The family resides in Granite Bay, California which is near Sacramento.

 

 

 

Band of Parents, Inc. a/k/a Band of Parents is a not-for-profit corporation duly incorporated under the laws of the State of New York. Band of Parents is a 501(c)3 public charity. Your donations are tax-deductible to the full extent of the law.