Social Security and Supplemental Security Income Resources

As a parent of a JM child, you may be entitled to assistance to help cover your child’s medical bills.The Social Security and Supplemental Security Income disability programs are the two largest Federal programs assisting people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.

Social Security Disability Insurance (SSD)

Social Security Disability Insurance (SSD) benefits you and certain family members provided you are “insured.” In this case, being “insured” means that you have worked long enough and in occupations where you paid Social Security taxes.

Supplemental Security Income

Supplemental Security Income (SSI) pays benefits based on financial need. The Social Security website has a wealth of information regarding these programs.

When you apply for either program, medical and other information from you is collected and a decision is made about whether or not you or your family member meet Social Security’s definition of disability.  

The Benefits Eligibility Screening Tool can be used to help determine which programs may be able to pay you or your family member benefits.

For more information, please visit

Affordable and Accessible Treatments for JM

Affordable and Accessible Treatments for JM

Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.

The FDA’s Ruling on Vamorolone in DMD

You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

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