BEINEINU NEWS & NOTES

September 20, 2012

USA

New York State Medicaid—We have been informed by a case manager that New York State is now sending out a packet of forms to be filled out when your child is turning 21 years old. This packet of forms is separate from the usual Medicaid recertification packet that is received every year. If these forms are not filled out and returned, your child will permanently lose their Medicaid. Please watch for those forms!

Neurofibromatosis Registry—The Children’s Tumor Foundation has notified us of the creation of an online NF Registry for those dealing with NF1, NF2, and Schwannomatosis. The purpose of this registry is to find people who may be eligible for clinical trials or other research studies being conducted in the field of NF and to determine specific NF characteristics. For those participating in the registry, the CTH will look for clinical trials or research studies that are seeking people with the participant’s NF characteristics and age. If they find a match, the CTF will provide the participant with the contact information at the institution conducting the research so that direct contact can be made. The registry can be found at www.nfregistry.org. For more information, contact Annette Bakker at 212-344-6633 ext 7029 or This email address is being protected from spambots. You need JavaScript enabled to view it..

Therapy Grant—Last call to apply for the quarterly therapy grant from Danielle’s foundation before the September 30th deadline. They will give a substantial grant to one child with Cerebral Palsy or Brain Injury to use towards therapy. Call 800-511-2283 for an application.

Focus on Bereaved Fathers—Our Tapestry Magazine, a quarterly Jewish publication by and for the bereaved, is planning to devote a section in their next issue to The Fathers. After a tragedy, we must realize that though men’s nature is to put up a strong front, a father’s emotions, feelings, and pain are just as real as that of the mother, sibling, or grandparent. Our Tapestry hopes to give voice to the fathers, as well as to spouses, children, and any other relatives and friends. Please submit your articles, stories, poems, memories, thoughts, concerns, and anything else that may be of interest to others to This email address is being protected from spambots. You need JavaScript enabled to view it. or fax to 718-853-2069. Deadline for submissions is November 1, 2012.