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 email@example.com
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 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.
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 firstname.lastname@example.org
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:
To find clinical trials at Memorial Sloan Kettering
To find clinical trials at the Children’s Hospital of Philadelphia
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.
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 email@example.com
For pediatric patients and families needing assistance with air travel.
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 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 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’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.
Application must be completely filled out and returned to AA – any non- applicable fields can have an N/A filled in.
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.