NF Buddy Book in English or in Spanish
To buy click here
Understanding Neurofibromatosis 1 (includes video) http://www.understandingnf1.org/
NF2 crew a group that chats online. This discussion group is for individuals with Neurofibromatosis Type 2, their spouses, significant others, and/or children www.nf2crew.org
CapTel phone users can listen to the caller and can also read the written captions in the CapTel’s bright display window.
is a working advocacy group for the NF2 crew www.advocurenf2.org
NF2 and under 25 you can join this yahoo group by emailing: NF2_Under25firstname.lastname@example.org
Acoustic Neuroma Association is a patient member organization, providing information and support to persons diagnosed with or treated for acoustic neuroma and other benign tumors of the cranial nerves. The Acoustic Neuroma Association creates and publishes a quarterly newsletter, distributes patient information booklets, presents a biennial national symposium, provides access to a network of local support groups, and maintains this website for patient information and discussion. Visit their website for more information and support group meetings. www.anausa.org
Community Resources ~ Families
Warmline Family Resource Center ~ Sacramento area (6 counties) 800-660-7995
Family Resource Network ~ San Joaquin Valley 209-472-3674
Support for Families ~ San Franscisco 415-282-7494
CARE Parent Network ~ Contra Costa County 800-281-3023
Matrix parent network and resource center ~ www.matrixparents.org 800-578-2592
Parents Helping Parents ~ South Bay 408-727-5775
Bananas ~ East Bay 510-547-7322
ACPA ~ (American Chronic Pain Association) www.theacpa.org (800-533-3231) ACPA groups welcome anyone who is living with an ongoing pain problem. The goal of an ACPA group is to provide support, validation, and education in basic pain management and life skills. Groups are facilitated by the group members themselves and the success of the group is a shared responsibility. ACPA groups do not focus on symptoms or provide treatment of any kind. Rather they are a means for people to share what they have learned and to encourage others to create more satisfying lives. To see if there is a group closest to you click on this link: www.theacpa.org/aa_03.asp?state=5
Community Resources ~ Adults
CIL (Center for Independent Living) www.cilberkeley.org Berkely 510-841-4776
InfoLine ~ Sacramento area 916-498-1000
CHADD (Children and Adults with ADHD) www.chadd.org 800-233-4050
NDLA (Non Verbal Learning Disorder Association) www.nlda.org 860-570-0217
Learning Disability Association of California www.ldaca.org 866-532-6322
Ability Resource Center www.abilityrc.com Walnut Creek 925-695-0409 Berkeley 510-595-5548
A Consumer’s Guide to Getting & Keeping Health Insurance www.healthinsuranceinfo.net
Children without Health Insurance www.coveringkids.org
Cover the Uninsured “State Guides” www.CoverTheUninsured.org
Persons with Total Disability; Senior Citizens www.medicare.gov
Low Income Individuals & Families; Persons with Disabilities www.cms.hhs.gov/home/medicaid.asp
State Children’s Health Insurance Programs (SCHIP) www.cms.hhs.gov
National Patient Advocate Foundation or 1-800-532-5274 www.patientadvocate.org
National Org. of Social Security Claimants & Representatives www.nosscr.org
(Social Security Benefits Denied) or 1-800-431-2804
American Medical Consumer www.medconsumer.com
Community Resources ~ Children
Early Start www.dds.ca.gov/index.cfm
If you think that your child or a child in your care is not developing like other children or has delays, California Early Start can help.
Evaluation services are available to all children who may be eligible for Early Start. Anyone can make a referral. The first step that parents can take is to discuss their concerns with their health care provider/doctor. You can also call the local regional center or school district to request an evaluation for the child. If the child has a visual impairment, hearing impairment, or severe orthopedic impairment, or any combination of these, contact the school district for evaluation and early intervention services. After contacting the regional center or local education agency, a service coordinator will be assigned to help the child's parents through the eligibility determination process. Parent-to-parent support and resource information is also available through Early Start Family Resource Centers.
With parent consent, the service coordinator will schedule an appointment for an evaluation of the child's motor skills, communication development, learning skills, social interaction, and emotional development. If the child is eligible for Early Start services, early intervention professionals will work with the family to develop a plan that addresses the child's needs, parent's concerns and the resources needed to support the child's development.
If you need additional information about accessing Early Start services call 800-515-BABY or e-mail them at email@example.com.
Regional Centers (ages under 3 years of age)
Regional Center www.dds.ca.gov/rc/rclist.cfm
Regional centers are nonprofit private corporations that contract with the Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities. They have offices throughout California to provide a local resource to help find and access the many services available to individuals and their families. A doctor doesn’t have to be the one to make this referral. You can call the office closest to you and ask for an evaluation. California has 21 regional centers with more than 40 offices located throughout the state that serve individuals with developmental disabilities and their families. To look up the Regional center closest to you
California Children’s Services (ages 0 –18) www.dhs.ca.gov/pcfh/cms/ccs
CCS is a statewide program that treats children with certain physical limitations and chronic health conditions or diseases. The program is funded with state, county and federal tax monies, along with some fees paid by parents.
Community Resources ~ School Information
CASE (Community Alliance for Special Education) www.caseadvocacy.org
San Francisco 415-431-2285 Hayward 510-783-5333 South Bay 408-283-1535
PAI (Protection and Advocacy, Inc.) www.pai-ca.org 800-776-5746
College Search and Guide Site www.collegeispossible.org
Fast WEB www.fastweb.com or 1-800-FASTWEB
Federal Student Aid Information 1-800-433-3243
Financial Aid Information Page www.finaid.org
Free Online Scholarship Search www.acenet.edu
Scholarship Resource Network www.smexpress.com
The College Board www.collegeboard.org
U.S. Department of Education www.ed.gov Student Guide to Financial Aid
Community Resources ~ General Information
Neurofibromatosis, Inc. www.nfinc.org
University of Chicago www.uchospitals.edu/peds-neurology/neurofibromatosis/
Harvard Medical School Center for NF www.understandingnf1.org
Massachusetts General Hospital http://neurosurgery.mgh.harvard.edu/NFclinic
Washington University at St. Louis www.neuro.wustl.edu/neurogenetics
National Library of Medicine www.nlm.nih.gov Click on “PubMed”
Office of Rare Diseases www.ord.nih.gov
Social Security Benefits Denied 1-800-431-2804 to locate an attorney in your state
National Patient Advocate Foundation www.patientadvocate.org or 1-800-532-5274
“A Consumer’s Guide for Getting & Keeping Health Insurance” www.healthinsuranceinfo.net
Children Without Health Insurance www.coveringkids.org or 202-338-7227 “Covering Kids”
Disability Etiquette Booklet by Judy Cohen www.epva.org
Bullying and the Young Child www.childhealthalert.com
Learning Disabilities www.fln.vcu.edu/ld/ld.html
Learning Disabilities Assn of America www.ldanatl.org 412-341-1515
Mercy Medical Airlift National Patient Travel Center www.mercymedical.org 757-318-9174
Patient Travel www.patientravel.org or www.patienttravel.org/ 800-296-1217
NF, Inc. California’s NF awareness DVD
Brian and Debbie Bell wanted to find a way to explain Neurofibromatosis to friends, potential sponsors, service groups and anyone else willing to listen. With help from friends they created a tool to do just that - a DVD that would explain to someone in just a few minutes what NF is. The DVD begins with Brian and Debbie’s personal story, then includes general information about Neurofibromatosis.
This project is the result of much generosity. NF, Inc. California would like to thank Vaca Valley Chiropractors, Dr. Sean D. Moffett and Dr. David J. Lamb, and the Shannon Gentile Travel Fund for the financial contributions and photos.
The final product was finished by Fruitful Productions and picsofthegame.com www.picsofthegame.com The DVD, which can be previewed on the homepage of our website at www.nfcalifornia.org. If you are interested in a copy of this DVD with a donation of $20.00 a copy can be mailed to you. Please contact the California office for more information 707-469-0467 or by sending an email to firstname.lastname@example.org
Neurology Now www.neurologynow.com 800-422-2681
This is a free subscription magazine to individuals with a neurological disorder and their caregivers and families.
Neurology Now, a bimonthly magazine for neurology patients, their families, and caregivers. Neurology Now brings expert advice about wellness and disease prevention, new medications and therapies, and strategies for coping with neurological disorders. Neurology Now provides balanced coverage of therapies based on the latest developments in laboratory research and clinical trials.
A Parent’s Guide www.bcnf.bc.ca 800-385-2263
A parent’s guide to the learning disabilities associated with Neurofibromatosis1. For information on purchasing this guide contact the BC Neurofibromatosis Foundation by calling 800-385-2263 or email email@example.com
14 Stories www.texasnf.org 800-942-8476
This book is published by the Texas Neurofibromatosis Foundation. Contact them to purchase 14 stories a guide for patients and families living with Neurofibromatosis. This booklet was designed to be a starting place for new patients with neurofibromatosis and their families, educators, caregivers, as well as medical professionals. It includes information about neurofibromatosis, resources and 14 wonderful brave patient’s stories and how they’re dealing with NF.
Understanding Neurofibromatosis www.nfinc.org 800-942-6825
This book is an introduction to Neurofibromatosis for patients and parents. For additional copies contact: Illinois Neurofibromatosis, Inc. Serving the Midwest 630-932-8111
Hydrocephalus www.hydroassoc.org 888-598-3789
The Hydrocephalus Association provides support, education and advocacy for individuals, families and professionals. Their goal is to ensure that families and individuals dealing with the complex issues of hydrocephalus receive: Personal support, Comprehensive educational materials, Ongoing quality health care. They provided a wealth of services and resources to their members and non-members alike. They have a wonderful library of resources to name just a few….( About Hydrocephalus ~a book for families, A Teacher’s guide to hydrocephalus, Health-care transition guide for teens and young adults)
The Complete IEP Guide “How to advocate for your special Ed Child”
Nolo press publication by: Attorney Lawrence M. Siegel. It doesn’t matter if your are going to be attending your 1st or 10th IEP meeting. You will find this an book extremely helpful when preparing for your meeting.
American Academy of Pediatrics
Health Supervision for Children with Neurofibromatosis
NINDS Neurofibromatosis Information Page
NINDS Neurofibromatosis Fact Page