Dear NB families,
For those of you who were unable to attend the recent CNCF conference, we'd like to let you know that the NB Parent Handbook is now available on the CNCF website at www.nbhope.org/handbook.
The Handbook has been prepared by NB parents, with the goal of sharing with others what they have learned during their children's NB treatments. The list of contributors is too numerous for me to thank individually here, but I am so grateful to all of them for generously sharing their insights and tips for coping with NB treatment. The chapters completed so far cover such varied topics as general background about NB; coping with the effects of chemo, 3F8s, MIBG, and accutane; exploring options for refractory and relapse; dealing with hearing loss; practical resources such as "travel guides," a directory of NB terminology, and forms for record-keeping; and many other matters.We have gone live because we hope the information gathered so far will be helpful - but the Handbook is only half done!!! More help is needed, so if you are a person who likes to write or research, please contact us at firstname.lastname@example.org
and let us know if you'd like to get involved. You can also help by contributing your own tips and suggestions, just by emailing us at email@example.com
Together we can continue assembling the information that will help current and future families traveling the NB journey. THANK YOU for your input!!
Finally, we ask for your help in spreading the word about the neuroblastoma handbook. It is our goal to have this information in the hands af every family who has a child diagnosed with neuroblastoma. Your help is extremely valuable. Please consider helping us spread the word. The follow article on the CNCF outlines some simple steps that you can take to help spread us accomplish this very important goal.
President, Children's Neuroblastoma Cancer Foundation