Family Voices - Maintains
an extensive lending library of books. Parent consultants
are also available to answer your questions and
to help you to access community supports. NH Family
Voices is run by parents having children with special
health care needs. NHFV has a free lending library,
a quarterly newsletter called "Pass It On,"
individual help and workshops in health care financing
as well as working with health care systems, help
in working with the school system, assisting with
starting support groups, information on specific
illnesses and conditions, and a collection of catalogs
and resources for daily living equipment, toys,
and adapted equipment.
(800) 852-3345 X4525 email@example.com
Brain Tumor Society - National Brain
Tumor Society brings together the best in brain
tumor research and supportive patient services.
We offer hope to patients, families, and caregivers
during every stage of the treatment journey. We
invest wisely and strategically in innovative research
that will lead to advances and ultimately to a cure.
(800) 770-8287 firstname.lastname@example.org
Special Medical Services
NH Special Medical Services provides medical and
financial services to
children with special health care needs, as well
as referrals to community resources, care coordination
services, nutritional consultation, psychological
and physical therapy consultation.
(800) 852-3345 X4488
Partners in Health has regional offices throughout
New Hampshire which link families whose children
have chronic health problems with community resources.
PIH is a great source of emotional support through
groups, counseling, referrals, as well as help with
services such as SSI and Medicaid applications.
Parent-To-Parent connects parents with one another
whose children have similar illnesses, giving them
an opportunity to talk with someone who has "been
there" and who can give useful info on resources,
Helps NH families and patients, children or adult,
who have brain tumors, traumatic brain injury, or
stroke and helps with living expenses and wishes.
Cancer related organizations:
to Internet Resources for Childhood Cancer
"First Connections" links NH Parents of
newly-diagnosed children with
parents who have been through similar treatment
of Miami Pediatric Neuro-Oncology Program
Childhood Cancer Foundation
Children's Cancer Society
P.O. Box 957672
Hoffman Estates IL 60195
Neuroblastoma Cancer Foundation
Children's Neuroblastoma Cancer Foundation has a
good website, offers an annual conference, provides
the NB Journal
Provides "Geoffrey Dollars" which are
Toys R Us gift cards for teens in treatment, "Hip
Hats" which are free, custom-made hats with
human hair attached, camp scholarships, and financial
assistance up to $500 for families in need. Pat
Minor, Program Director.
Cancer Information Service
Raymond International Registry of Bone Marrow
University of Massachusetts Medical Center
55 Lake Avenue North
Worcester, MA 01655
Marrow Donor Program
3001 Broadway Street Northeast
Minneapolis, MN 55413-1753
Bone Marrow Transplant Link
- Children's Organ Transplant Association, Inc.
2501 COTA Drive
Bloomington IN 47403
820 Davis Street, Suite 420
Evanston, Illinois 60201
(847) 424-0606 Fax
Society of America
495 Old Connecticut Path
Framingham, MA 01701
(800) 688-6572 (Toll Free)
(508) 879-8163 (Fax)
and Lymphoma Society
Covers leukemia, lymphoma, multiple myeloma and
Hodgkin's disease. Good source of information and
educational material; limited financial support.
Children's Cancer Society
A national support organization, which provides
education and limited financial support for living
expenses related to cancer.
1015 Locust St., suite 600
St. Louis MO 63101
Children's Brain Tumor Foundation
A good resource for basic brain and spinal cord
information, parent-to-parent network, and research.
They offer a newsletter, The Challenge, and patient
support at a toll-free number. A Resource Guide
for Parents of Children with Brain and Spinal Cord
Tumors is available to families free of charge.
Tumor Foundation for Children, Inc.
Has a newsletter for families. When a child is diagnosed,
the family is offered direct personal support.
Make-A-Wish of NH
Hopes Foundation of NH, Inc.
Provides wishes, as well as limited financial support,
for New Hampshire families.
Cancer Recovery Foundation Children's Project
This Pennsylvania-based foundation offers three
important services to families: gift baskets (e.g.
games, personal toys, crayons, sketchpads, stuffed
animals), summer camp scholarships, and emergency
financial assistance ($100 limit).
The STAR (Steps Toward Adult Responsibility) program
is a group mentoring program for teens with chronic
physical health conditions and their families. Teen
participants are 13 - 18 year olds whose lives are
effected by chronic physical health conditions including,
but not limited to, asthma, cancer, cardiology conditions,
cerebral palsy, Crohn’s disease/colitis, cystic
fibrosis, diabetes, hearing impairment, juvenile
rheumatoid arthritis, seizure disorders and spina
bifida. The centerpiece of STAR is the monthly topic-focused
dinner gatherings that bring teens together with
Dartmouth College student mentors who are also living
with chronic health conditions. While teens and
mentors meet, parents also come together in a support
group led by a social worker. The goal of STAR is
to provide a supportive environment in which to
learn strategies to gain physical and psychological
health in the face of chronic illness, and to suggest
tools to help navigate a successful transition to
adulthood. Please contact the STAR program at the
Special Needs Support Center at 603/448-6310 or
check out the website at www.starprogram.net.
Clearinghouse for support group information
Ronald McDonald Houses (Searchable database
of all RM House locations)
One Kroc Drive
Oak Brook, Illinois 60523
A Guide to oncology resources on the internet. Most
links are to specific topics found in Oncolink,
NIH, NCI, Health Canada and other reputable sources.
For 6-12 year old brothers and sisters of children
who have a chronic health condition such as cancer.
(603) 653-1488 Toni
(603) 443-4107 Cory
cancer related resources:
Provides information, support, limited financial aid.
(802) 223-2348 VT
(603) 472-8899 NH
National nonprofit, provides counseling, support groups,
referrals, telephone contact, on-line services.
National Cancer Institute: Information on diseases,
coping, family supports, resources.
of Pennsylvania ONCOLINK: One of the best sources
of reliable disease-specific information and links.
Includes "PDQ"info from National Cancer
Institute for patients and families.
Brain Tumor Foundation
Provides extensive information for families, including
publications and a newsletter, a Medical Advice Nurse,
chat room, and message board, as well as links to
other websites related to brain tumors.
Brain Tumor Association
Another excellent website offering a wide variety
of services from a "primer of brain tumors"
to an online dictionary of medical terminology, networking
links, advocacy efforts, "comfort & resources,"
and a message line newsletter.
This is an online support mailing list for young people
(12-21) with cancer. They can be on or off treatment.
This is a website for children of all ages, but is
divided into categories for children and teens. The
focus is how to deal with medical problems of any
kind and it contains helpful hints for parents, teachers
and other professionals.
The site has contest, games and stories. It also has
a chat room and is in Spanish or English.
A website dedicated to children with cancer. This
is a place where they can share their stories and
it has a memorial section.
The Association of Pediatric Oncology Nurses has assisted
in designing this webpage for children of all ages
who have been diagnosed with cancer. It contains both
information and entertainment.
Captain Chemo Website
This is an interactive comic strip/game which also
teaches children about cancer and treatment.
Good, Feel Good
This web site for teens deals with appearance issues
as well as relationship and emotional issues.
Brain Tumor Association
An excellent site for medical explanations geared
at children. It also has word games.
The site is open to all teens with life-threatening
illnesses that are referred by a hospital or clinic
and who complete the necessary application.
Forms of Assistance:
Lodging near DHMC
Families whose children are receiving medical care
at DHMC are welcome to stay at David's House, the
"home away from home" that is walking distance
from the hospital. David's House has comfortable,
attractive rooms for fifteen hospital families at
a cost of $10/family/night.
Local lodging at discounted rates for families and
friends of those being treated at Dartmouth Hitchcock
Medical Center. Information is available at the hospital
rotunda and Office of Care Management.
-- By car
Reimbursement is available in some cases for trips
to and from clinic visits and hospital stays. For
families covered by NH Medicaid, call the Medicaid
Transportation Coordinator at (800)852-3445 X3770
or 603 271-3770. Medicaid can also provide a driver
if you cannot drive yourself, or if your car is unavailable
(same number). In VT, Medicaid also reimburses for
mileage. A list of towns and phone numbers to call
is available from Office of Care Management. In addition,
the Leukemia and Lymphoma Society will pay a small
amount (currently $.05/mile) for mileage (see above
for phone number and website).
- By air
Discount and no-cost air travel for medical treatment
is available for
families and patients with cancer. National Patient
Travel Center is a link to these services.
& Electric Utilities
To make sure that telephone and electric service are
maintained, utilities will honor emergency requests
for one or two months maximum during a calendar year
and plans must be made to pay overdue bills. Office
of Care Management may be able to assist. OCM can
also help you with referrals to Consumer Credit Counseling
and local community assistance programs to help you
get back on your feet.