SMA (Spinal Muscular Atrophy)
is a neuromuscular disease passed on genetically to children by
SMA Affects a child's muscular
development. The earlier the symptoms are noticed, the more
severe the type of SMA. Type 1 is the most severe, affecting
children while still in the womb or shortly after birth.
Type 1 children are usually not
able to hold up their heads, roll over, crawl, sit up without
support, or walk.
All muscles are extremely weak,
with the weakest muscles being the legs, upper arms and neck.
Also affected are sucking, swallowing, digestion and breathing.
This type is often fatal, with
the last known statistics showing an average lifespan of 8 months,
80% gone in less than a year and the majority of the rest gone by
the age of 2 unless ventilation or "life support" is
these statistics are no longer a hard and fast rule, and the more
time goes by, the better quality and quantity of life these children
SMA is the Top Genetic Killer
of children under the age of 2!
1 in every 40 people carry this
1 in every 6,000 children are
born with SMA.
THERE IS NO CURE.
For more specific information
on all the types of SMA and what they mean, visit our SMA
SMA Support Inc. is
dedicated to providing information and support in any manner needed to
any and all families affected by the disease Spinal Muscular Atrophy.
Such support consists of medical equipment, funeral expenses, medical
supplies, flight costs to required appointments, educational funding,
equipment to maintain quality of life, live and internet support, and
other forms of information as well as support not covered by insurance
that such families may need. It is our goal to improve both the quality
and quantity of life for those children afflicted with Spinal Muscular
Atrophy to the best of our ability.
of the larger organizations out there are dedicating the majority of their
efforts towards finding a cure-and only a few of those are actually
targeted towards SMA. A cure is extremely important without a doubt, the
only way to stop future children from succumbing to this disease;
getting the word out and finding the cure are two things I hope you all
fully support! But
there are also families who are living with this disease RIGHT NOW who need
is considered a terminal illness, and as such many insurance companies
consider any care or treatment to be "experimental" and thus NOT
COVERED! Those who do cover some equipment rarely cover everything that
a family needs for their child.
leaves families with no way to afford the equipment that will help their
children eat, move, breathe, or even sit up or sleep properly. It can
leave them with a poor quality of life and little hope for the future.
is a medical protocol and a diet that have been developed that is being proven
in many cases to keep these kids alive, stronger and healthier longer, but
insurance companies will often not pay for the equipment needed to do
are often uninformed about the latest information which means many parents are
also not given the most up-to-date information. It is also our goal to
change that fact, giving each family all of their options, and thus their child the best chance they can have at
a comfortable and if desired even longer and relatively healthy life.
SMA Support sends
out equipment to families such as feeding pumps, breathing machines,
suctioning machines, wheelchair ramps, feeding chairs, bath chairs, monitoring
machines, nebulizers, and any other equipment necessary to give these children
the best chance at life-or comfort.
We also provide
information to parents and medical professionals alike on medical facilities,
proper ways to handle necessary procedures such as scoliosis surgeries and
feeding tube surgeries, proper nutrition, and physical, occupational, speech,
and water therapies.
SMA Support provides constant
on-line support by website, e-mail, live chat and email list, answering
questions from parents dealing with everything from new diagnosis' to
insurance refusals to doctor disagreements to simple parenting questions to
tough medical decision questions. This provides a network of hundreds of
experienced parents who can be there to support those in need of answers.
Support will also be providing flights for children who need to get to SMA
Experts, for Make-A-Wish trips, and so on.
provide website design and hosting at no charge for families and their
children-to help family and friends far away keep in the loop of what is going
on or to use as memorials for those children who have passed on from this
earth. There are over 100 websites that have been designed and hosted at
no charge to date, and the number grows every month!
is not a complete list. Simply, SMA Support has been created solely to
support families in what they need today to help their children and their
family's quality of life be the best that it can reasonably be, however that
may be accomplished. We are leaving the work of finding the cure to the
large organizations with the funding and ability to do so and hope you will
support them as well, while we concentrate on helping those currently living
with the disease as best we can.
YES! SMA has
been cured in mice! They now know what causes it, and are currently
testing compounds to find the one that will work for humans with the most
safety. All they need is time...and money. In the meanwhile, the
children who are here now are often very short on time.
If you would like to make a
tax-exempt donation in support of SMA families, you may send a check, money order, or credit card
SMA Support Inc.
P.O. Box 6301
Kokomo, IN 46904-6301
Donate Here Through PayPal.
All major credit cards are accepted, and
you may also place a credit card donation on-line via use of a secure
server with THIS
FORM. (The on-line donation form IS on a
secure server. This means no-one can get your credit card
information from your on-line donation. It will ask if you want to proceed
because the security certificate does not match. This is because
it costs several hundred dollars to purchase an individual security
certificate so I am using the one from our computer business, Cscape. It is STILL secure, it just does not have
SMA Support's name
on it. So just say 'Yes' or 'Okay'.) Before placing your donation on-line please read the
If you have any questions or comments, feel free to contact me
at the above address, attn: Laura Stants,
me, or call or fax at the above numbers!
Thank you for caring, for helping us provide
crucial information and equipment to help keep these children as strong
and healthy as possible, to help them fight for their future!
*A Special Thank you to the families and
friends of Doris White, Kathy Kosches and Judith Cunnally, who have given SMA Support the
honor of commemorating these ladies' lives. We hope they know how much
their support means to us personally as well as to the families whose lives will
be impacted by their generosity.
**Another Special Thanks to The
SMA Foundation, who is generously donating money to support our efforts!