For Families


If you are a parent or caregiver of a child recently diagnosed with SMA, it can be a confusing and emotional time. Fortunately, there is an entire community, on the front lines, giving everything they have to help battle this condition and come up with a cure. This section of our site will help you learn more about how to care for your child and how to connect with those that are standing by to assist you as you learn more about SMA and the decisions you will make during this journey.



Standard of Care

A Family Guide to the Consensus Statement for Standard of Care in Spinal Muscular Atrophy covers recommendations on these topics:
  1. Confirming the diagnosis of SMA
  2. Managing breathing
  3. Managing eating and nutrition
  4. Managing movement and daily activities
  5. Preparing for illness
To learn more about the Consensus Statement for Standard of Care in Spinal Muscular Atrophy or research articles and publications relating to clinical care issues, visit our For Physicians page.


Resources

Muscular Dystrophy Association Direct Services
Services to enhance mobility and independent living are available in each community through MDA's local network of field offices.

SMA Support offers an equipment pool that is available for your use to help meet your children's needs.

SMA Medical Supply The mission of S.M.A. Medical Supply is to provide a hassle-free medical supply resource, rooted in understanding, experience, and honesty that will carry SMA-appropriate products and strive to reduce the emotional and financial burdens of attaining them.

Government agencies offering financial assistance:

Social Security Administration

Spinal Muscular Atrophy Types 0 and I included in SSI compassionate allowances initiative.

Medicare & Medicaid

Medicaid is a state run health care program and provides a search tool to find local contacts in each state. You can open the search program here.



Support Groups

B4SMA was founded in March 2004 by MJ Purk and Brenda Hanson The sole purpose of B4SMA is to provide love and blanket hugs to SMA children and their families.. MJ has lived with SMA for twenty-one years and has alwayed enjoyed supporting SMA families and their endeavors. Brenda has been MJ's caregiver and friend since 1991.

SMAspace. The original Spinal Muscular Atrophy (SMA) social network.


Video

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