Helpful Links

The 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 e-mail 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 Madison's Foundation.

 

 

Care Packages/Gifts For Your Child:

  • Cole's 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.

  • B4SMA-Personal hand-made blankets for children with SMA, founded by MJ Purk.

  • Andrew's Toybox-A not-for-profit organization that provides care packages and smiles to children with serious or terminal illnesses.

  • Make A Child Smile-Another organization that you can sign up for that will provide care packages for your child & family.

  • Hugs and Hope- Send some joy to a sick child-or submit your child to receive!

  • Angels 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!

  • Custom-Made 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!

  • Angel Threads-  Custom embroidery specialized in personalized gifts...by a mother with an SMA Angel of her own, Jordon.

 

On-Line SMA Chats for parents:

  • MDA 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 and passed.

  • SMA 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!

 

Helpful Articles:

 

Medical Info, Equipment & Toys:
 (Please check with your doctor before implementing any new medical procedures!)

  • Laureate Learning Systems, Inc.- They make software for kids with Special Needs.

  • Rifton Equipment- 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.

  • Special Needs Toys-Switches, swings, all sorts of great toys and equipment

  • Able Play-Contains 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.

  • Ergoguys- 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.

  • Dr. Bach's Website-the site for answers to questions, articles on care, letters of necessity to help get needed equipment, etc.

  • Enabling Devices- Adapted toys for special needs kids.

  • ABA Materials- Software to assist parents and educators to teach speech and language to children with disabilities.

  • Leckey- Great bath chairs and other seating stuff.

  • Speech Dynamics-specializes in informative oral sensory-motor seminars, practical therapy products and publications, and valuable therapy-enhancing tools.

  • Fatty Oxidation Disorders- Since typically our children have fatty acid metabolism disorders, here's a link to support for these disorders:

  • Gastrostomy Support - This is a gastrostomy support site with great g-tube information.

  • Hannah's 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

 

On-Line Magazines:

  • Special 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.

  • Exceptional Parent Magazine- On-line magazine for parents with children with special needs.

  • NIV News-Noninvasive Ventilation Newsletter-a quarterly newsletter with information and support for those who choose to use the non-invasive protocol for their kids.

 

Financial Assistance Available:

  • Children 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 Available!!

  • Social Security Administration-Information on Supplemental Security Income, disability, and related benefits.

  • Health Care Financing Administration- Offers information on Medicare, Medicaid, and managed care.

  • Center for Drug Evaluation and Research-This is the site with the FDA-here you can find out about any existing drug trials.

  • Muscular 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.
  • Disabled 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.
  • First Hand Foundation-a philanthropic, nonprofit foundation which helps the families of children with health problems address the financial aspects of their child's healthcare.

 

SMA Organizations:

If you or your child has SMA, you may find that your local medical community is not as educated as you would like on this particular disease.  I would highly recommend and strongly urge that you learn as much about SMA as you can, to help you make educated decisions about your child's care and life.  You also may have difficulty finding anyone in your area to provide support or help to you.  The following websites are all places which provide both information about SMA as well as support for family, friends, and loved ones.

 

Resources:

Following is a listing of sites with resources for families with special needs children.

  • Family Friendly Fun-Family friendly fun and special needs resources to enhance the quality and fun of family life with special needs.
  • Enable Mart- Accessibility Training Aids Technology
  • Super Duper Inc. - A free-shipping on-line source for therapy supplies such as tongue depressors.
  • FlagHouse - for therapy/rehab equipment 
  • The Alliance for Technology Access - Connecting children or adults with disabilities to Accessibility Technology Tools. 
  • Saltillo - Affordable Communication Solutions for non-speaking people.  (Pad Pals, etc.) 
  • Abilitations - The product mix focuses on movement, positioning, sensory-motor, exercise, aquatics and play. Our products greatly benefit special needs individuals.

  • Starbright -  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."

  • Crestwood 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.

  • Infogrip - 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:
 
  

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