Supporting Others-SMA Support, Inc.

bullet What Is SMA?
bullet What Is SMA Support?
bullet Why Is It Important?
bullet What Does It Do?
bullet Is There Hope?
bullet How Do I Make a Tax-Exempt Donation?
bullet How Do I Apply For Assistance?





What Is SMA?

  • SMA (Spinal Muscular Atrophy) is a neuromuscular disease passed on genetically to children by their parents.

  • 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 provided.

  • **HOWEVER**, 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 are having!

  • SMA is the Top Genetic Killer of children under the age of 2!

  • 1 in every 40 people carry this gene.

  • 1 in every 6,000 children are born with SMA.


  • For more specific information on all the types of SMA and what they mean, visit our SMA Info page.

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What Is SMA Support?  


SMA Support, Inc. Mission Statement:

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.

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Why Is It Important?

All 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 additional help.

SMA 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.

This 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.

There 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 so.

Doctors 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.

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What Does It Do?

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.

SMA Support will also be providing flights for children who need to get to SMA Experts, for Make-A-Wish trips, and so on.

We also 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!

This 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.

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Is There Hope?

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.

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How Do I Donate?

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 information to:

SMA Support Inc.
P.O. Box 6301
Kokomo, IN 46904-6301

Phone: 317-536-6063

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 above paragraph.

If you have any questions or comments, feel free to contact me at the above address, attn: Laura Stants, e-mail 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!


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*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!


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