following links have been found to be helpful by the people who know the
best--the parents! If you have any you would like to add, please
me the link!
To search for other rare diseases: whether you
are not yet sure of a diagnosis, or the diagnosis does not reveal SMA; or
to find support for other rare diseases, please contact
Care Packages/Gifts For Your Child:
Quilts-A group of stitchers who come together to create hand-made
quilts for children who have or have passed away from SMA. Founded in
Cole Webb's honor.
hand-made blankets for children with SMA, founded by MJ Purk.
organization that provides care packages and smiles to children with serious
or terminal illnesses.
A Child Smile-Another
organization that you can sign up for that will provide care packages for
your child & family.
and Hope- Send some joy to a sick child-or submit
your child to receive!
For Hope- Receive or send free crocheted angels,
butterflies or smiley faces as a reminder that you/they are not alone and
that someone cares!
Angel Pins- This is a site that will create a
custom-made angel pin for your child at extraordinarily reasonable
prices. Take a look at the site under "Angel Index" and at
what has been done for other children!
Threads- Custom embroidery specialized in personalized
gifts...by a mother with an SMA Angel of her own, Jordon.
On-Line SMA Chats for parents:
SMA Chat-Once a week, get
on-line and chat live with other parents dealing with SMA.
SMA Support E-mail
Chat - Talk daily one-on-one via e-mail with other
parents, caregivers, and family members of kids and adults with SMA Types 1 or 2, here
Support Live Chat - Chat live with other people
dealing with SMA. Ask questions, provide help, swap ideas-set up times
you'd like to chat live with your own circles or meet new ones!
Equipment & Toys:
(Please check with your doctor before
implementing any new medical procedures!)
Learning Systems, Inc.- They make software
for kids with Special Needs.
Provides quality walkers,
standers, chairs, tricycles, bath chairs and toileting systems that can be
adjusted to meet many needs.
Pocket Full of Therapy-
Pocket Full of Therapy is a web site designed by physical therapists
with great therapy toys at very reasonable prices! They make for good
gifts and help, as well as very functional.
Needs Toys-Switches, swings, all sorts of great toys and
authoritative ratings and detailed reviews on toys based on their
suitability for kids with various special needs. This allows parents,
families, friends, and therapists to easily find the best toy for their
child with special needs.
Offers ergonomic and assistive technology products. They carry products like
the Smart-Nav, the Headmouse, Ablenet switches, and BigKeys keyboards along
with more mainstream products like Kidstation Computer furniture.
Bach's Website-the site for answers to questions, articles on
care, letters of necessity to help get needed equipment, etc.
Devices- Adapted toys for special needs kids.
Materials- Software to assist parents and educators to teach
speech and language to children with disabilities.
Great bath chairs and other seating stuff.
informative oral sensory-motor seminars, practical therapy products and
publications, and valuable therapy-enhancing tools.
Oxidation Disorders- Since typically our children have fatty acid
metabolism disorders, here's a link to support for these disorders:
Support - This is a gastrostomy support site with great g-tube
Medical Care- Read the amino acid diet in detail as well as other
Medical and Nutritional Information Spelled out. It's under
construction but very thorough in what is up so far.
The SMA Project -
the website for the Collaborative Program to
Accelerate Therapeutics Development for Spinal Muscular Atrophy (SMA).The
National Institute of Neurological Disorders and Stroke (NINDS) has
established this model translational research program to accelerate the
process of developing a safe and effective treatment for SMA
Child Magazine- An on-line magazine for
families of children with special needs. SMA was featured in their
Disorder Zone in February of 2000. And in their Library of Disorders
are several stories of kids with SMA.
Parent Magazine- On-line magazine for parents with children with
News-Noninvasive Ventilation Newsletter-a quarterly newsletter
with information and support for those who choose to use the non-invasive
protocol for their kids.
With Disabilities- Offers families & service
providers information about advocacy, education, employment, health,
housing, recreation, technical assistance, and transportation
covering a broad array of developmental, physical, and emotional
disabilities. Shows State/Local & Federal Resources
Security Administration-Information on Supplemental
Security Income, disability, and related benefits.
Care Financing Administration- Offers information on
Medicare, Medicaid, and managed care.
for Drug Evaluation and Research-This is the site with
the FDA-here you can find out about any existing drug trials.
Dystrophy Family Foundation-the Foundation
has only one mission; to provide adaptive equipment and emotional
support to individuals and families affected by one of over forty
neuromuscular diseases covered under our program.
Children's Relief Fund-a
non-profit 501(c)(3) organization, provides disabled children
with assistance to obtain wheelchairs, orthopedic braces, walkers,
lifts, hearing aids, eyeglasses, medical equipment, physical
therapy, and surgery.
Hand Foundation-a philanthropic, nonprofit
foundation which helps the families of children with health problems
address the financial aspects of their child's healthcare.
Following is a
listing of sites with resources for families with special needs
Friendly Fun-Family friendly fun and
special needs resources to enhance the quality and fun of family
life with special needs.
Training Aids Technology
Duper Inc. - A free-shipping on-line
source for therapy supplies such as tongue depressors.
for therapy/rehab equipment
Alliance for Technology Access -
Connecting children or adults with disabilities to Accessibility
- Saltillo -
Affordable Communication Solutions for non-speaking people. (Pad
The product mix focuses on movement, positioning, sensory-motor,
exercise, aquatics and play. Our products greatly benefit special
an online community that provides information and support to
help families care for their seriously ill child. The site features
practical tips, daily solutions, and inspiring personal stories from
other parents who have "been there."
Communications - Products based on need,
starting with what the person can do. There is a
wide variety of practical products to meet individual needs.
The goal is to help people open the doors of communication so that
they can control their own environment and gain independence.
Have developed products that provide people with a healthier and
more productive way to interact with computers. It has both
adaptive switches, keyboards, mice, desks...etc. and a small
selection of children's software that can be used with switches.
Special Needs Family Fun - Offers family
fun and special needs resources to enhance the fun and quality of
family life for families with disabilities.
Organizations for Grieving:
Grief is a long and
difficult process. Each of the links listed below will tell you
many things-but the most common is that as long as you are not causing
harm to yourself or to others, THERE IS NO WRONG WAY TO GRIEVE and there
is no time-line for grief. Another common thread is that most
people who have not experienced the grief of losing a child do not
understand it. If you want people to know how to treat you during
the time you are dealing with facing a child with a terminal or
debilitating illness, or after the death of a child, you will have to
tell them how! Let your needs be known, and you will be amazed at
the people who will respond to and appreciate your honesty; and at how
it helps you through your grief.
Here are places where parents,
friends or loved ones can purchase little gifts or special remembrances
in honor of children who have passed away: