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 the disease.

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.

SMA Support: An 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 SMA Coalition: The web page detailing the SMA Coalition's mission-a united front among the majority of non-profit SMA organization in the country, standing 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. 

SMA Angels Come meet children dealing with Spinal Muscular Atrophy (SMA); read their stories, see their faces. These little angels will touch your heart!

Payton's Pals: 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 families.

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).

B4SMA: 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 www.our-sma-angels.com/cole.

Taleah Louise English:  The website for Taleah, created by her parents in her honor.

Angel Jacob Trick:  The site for Jacob, Baby Bear.

Aleena Hope: Site for Aleena Hope Miller

Buddy Bryan: Buddy 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 for Elizabeth.

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 neuromuscular disorder.

Hard Wiring a switch adapted toy: Step-by-step directions on how to adapt a toy.

Center for Courageous Kids: The Center for Courageous Kids® 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 staff.

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

Kid Power Links: A list of links for people with a variety of special needs