SUPPORT

RESOURCES FOR FAMILIES

By sharing our stories and experiences, we come to understand the courage, grace and power of the human spirit, we see amazing children and their parents rising up – to push through another day, to combine networks of influence, to share talents and to increase our impact.

 

Membership is open and free to all families facing the challenges of neuroblastoma treatment.

 

To join the Band of Parents, please email our Development Director Kim Roginski at kimroginskibop@gmail.com

 

Online

Our members reside across the United States and the world and our email group connects you with others for support, information about new treatments and opportunities to help with fundraising and advocacy projects. Please, email us to learn more about how to become part of our group.

 

In-Person

In addition to sharing our experiences with neuroblastoma treatment and its effects, we meet periodically with doctors to learn more about current treatment protocols and the status of promising research initiatives underway.

 

Each year, the Band of Parents sponsors fundraising events, large and small. There are also member-sponsored bake sales, art  auctions, benefit concerts, golf tournaments  and other creative means of mobilizing support.  All ideas for fundraising are welcome.  Please contact the Band at 917-409-6567.

 

Buddy Program

Many of The Band of Parents members have children currently in treatment at cancer centers around the United States.  We understand the many hurdles of treatment and are available as a resource to newly diagnosed neuroblastoma families. To find out more or to request a buddy please contact Kim Roginski at  kimroginskibop@gmail.com

 

 

Ronald McDonald House

Ronald McDonald House provides housing during a child’s treatment for catastrophic illness. A $35 dollar donation is suggested, but if payment is cannot be made the fee is waived.  RMH has locations close to all major pediatric centers in the US.  The link below will help you find a chapter close to your child’s hospital. http://rmhc.org/

 

To Find Clinical Trials around the country:

www.cancer.gov/clinicaltrials

 

To find clinical trials at Memorial Sloan Kettering

www.mskcc.org

 

To find clinical trials at the Children’s Hospital of Philadelphia

www.chop.edu

 

Neuroblastoma Parent Handbook created by the CNCF – many of our members have contributed their firsthand knowledge to make this a must read for the newly diagnosed.

 

To find clinical trial information and write-ups from around the globe.

www.nbglobe.com

 

Candlelighters

Candlelighters are part of a wonderful organization called the American Childhood Cancer Organization, which provides families with emotional and practical support as their child faces cancer treatment. They ensure that families coming to a new city for a child’s treatment have a friend around the corner.

 

Barbara Zobian, founder of the NYC Candlelighters and beloved member of the Band of Parents, says, "We are the friend when their hometown friends are a thousand miles away." The link below will take you to the affiliate look up page so you can find a chapter close to your child’s hospital. www.acco.org/AboutUs/

 

In New York, you can contact Barbara directly at barbara@candlelightersnyc.org

 

Air Travel

For pediatric patients and families needing assistance with air travel.

 

Corporate Angel Network

Phone: 866-328-1313

The Corporate Angel Network, a volunteer organization, is available to help you with free long-distance air travel to or from NYC hospitals, as well as helicopter service to the East 34th Street heliport in Manhattan for patients within a 200 air-mile radius. There is no financial need requirement. Learn more about the Corporate Angel Network.

 

The Air Care Alliance

Phone: 888-260-9707

The Air Care Alliance lists many humanitarian air transport groups that provide free flights for patients with medical needs. This organization and its affiliates operate in most areas of the United States. Patients have no financial obligations. Learn more about the Air Care Alliance.

 

Air Charity Network

Phone: 877-621-7177

Air Charity Network coordinates flights across the continental United States as well as Alaska and Hawaii for patients or caregivers in need. Flights are available through independent member organizations in specific locations. Learn more about the Air Charity Network.

 

Angel Flight, Inc.

Phone: 918-749-8992

Angel Flight’s volunteers and pilots offer charitable flights to patients traveling primarily to or from the heartland region of the United States. Angel Flight can also coordinate flights out of their targeted areas with other aviation organizations.

 

American Airlines Medical Travel Program

Application must be completely filled out and returned to AA – any non- applicable fields can have an N/A filled in.

 

Patient AirLift Services, (PALS)

Patient AirLift Services arranges volunteer medical flights and free air transportation for needy individuals throughout the greater Northeast region, from Virginia to Maine, Ohio to Massachusetts.

 

 

 

 

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.