Support and Research Organizations
Spinal Muscular Atrophy Foundation:
The mission of the Spinal Muscular Atrophy Foundation is to accelerate
the development of a treatment or a cure for SMA, the number one genetic
killer of infants and toddlers. The Foundation is dedicated to preventing
the death and suffering of thousands of children whose lives depend upon
increasing research funding to fulfill the scientific opportunity to cure
FightSMA / Andrew's Buddies:
This is a national organization committed to
accelerating a cure for spinal muscular atrophy (SMA), the number-one
inherited killer of children under two. On this site, you will find
up-to-date reports from the research front. And you will find ways that
you can become involved in this fight yourself.
all-volunteer, non-profit, 501(c)(3) tax-exempt organization dedicated to
providing information, equipment and support to family, friends,
individuals and caregivers on all aspects regarding the devastating
genetic disease Spinal Muscular Atrophy.
The web page detailing the SMA Coalition's mission-a united front among
the majority of non-profit SMA organization in the country,
united and working together to raise awareness and advocate for progress
towards a treatment and cure for the leading genetic killer of infants and
toddlers – SMA.
Miracle for Madison:
The non-profit organization set up to support fundraising efforts at Ohio
State University to find a treatment/cure for SMA.
Come meet children dealing with Spinal Muscular Atrophy (SMA); read their
stories, see their faces. These little angels will touch your heart!
Paytons Pals is a non-profit, all volunteer
organization, dedicated to the eradication of spinal muscular atrophy,
focused on spreading awareness and committed to the support of sma-affected
The Benjamin Foundation:
The Benjamin Foundation was founded as a
volunteer-driven and publicly-supported organization dedicated to raising
awareness and funds for the fight against Spinal
Muscular Atrophy (SMA).
This is a new website of MJ's, created to help other kids diagnosed with
Spinal Muscular Atrophy. MJ is accepting donations along with quilting
materials to make blankets for newly diagnosed children with SMA
Cole Webb's Memorial Site:
A special site made by MJ in honor of Cole Webb who passed away with SMA
Type 1. Also, visit his other site at
Taleah Louise English:
The website for Taleah, created by her parents in her honor.
Angel Jacob Trick:
site for Jacob, Baby Bear.
Site for Aleena Hope Miller
has achieved so much in his life "And in fact, people with physical
disabilities are not different. They are different, but not... the mind
of a physically disabled person works exactly like yours, they have the
same emotions, needs, desires, and so forth and so on."
Elizabeth's Quilt of Love: A virtual online quilt made especially
Children Donate Too: (must be viewed in Internet Explorer)
Elizabeth's website featured on here.
Respiratory Care for Neuromuscular Disorders (ATS Consensus): Mainly
written for Duchenne patients, however it can be applied to any
Hard Wiring a
switch adapted toy: Step-by-step directions on how to adapt a toy.
Center for Courageous Kids:
The Center for
is a 501(c)(3) not for profit corporation
dedicated to uplifting children living with chronic or life
threatening illnesses. A stellar medical camping facility, we are
designed specifically for the child with medical challenges and his/her
family members, at no cost to them. Elizabeth & her friends enjoyed a
fantastic weekend courtesy of this amazing facility and it's amazing
Walking is Overrated:
Merchandise designed by our friend MJ and inspired by me
SMA Research Updates:
Updates on Research for a cure for Spinal Muscular Atrophy
Links: A list of links for people with a variety of special needs