Along with funding SMA research and care, Cure SMA provides thousands of individuals and families with vital support and resources that help people navigate life with spinal muscular atrophy (SMA). In addition to our current support programs, Cure SMA is thrilled to launch a brand-new program offered to all affected individuals with SMA to help identify their medical needs in case of a medical emergency.

Through this program, a Responder PHR (Personal Health Record) package is provided so medical personnel will have immediate access to the patient’s medical records stored online, whether the patient is able to communicate for themselves or not. This includes prior medical conditions, allergies, current medications, etc. Each Responder PHR comes with a waterproof, silicone Medical Alert adjustable bracelet and matching waterproof Medical ID keychain.

Also included in the package is the option to customize two sets of engraved acrylic plates with the patient’s most vital health information. This—along with an engraved plate providing instructions on how to retrieve personal medical information from the bracelet—is meant to be read at-a-glance by medical responders who need immediate access to the PHRs online. These can be easily retrieved using any internet capable device (e.g., Smartphone) and a simple PHR-access login URL secured with a unique Member ID number. The patient can also choose to give access to all records or select the health information they want to share based on what is stored within the online system.

The Responder PHR system also serves as an organizational tool and allows the user to input personal information and previous health records into categories, including:

  • Medical conditions
  • Medications
  • Allergies
  • Emergency and doctor contacts
  • Insurance information
  • Immunization records
  • Medical procedures
  • Advance medical directives
  • Living will
  • Durable power of attorney
  • Organ donor status
  • Other pertinent info

If you are an individual with a confirmed SMA diagnosis, or a legal guardian of a child with SMA, and are interested in receiving a Responder PHR with Medical Alert Bracelet and Keychain, please click below to request one at no charge. Applicants must reside within the United States.

Medical Alert Bracelet Request Form

 

As part of the application for this support program, you will be asked to fill out a survey regarding how you or your family have been affected by the current global pandemic. This is part of Cure SMA’s efforts to stay current with the impact COVID-19 is having on the SMA community so we can best meet your support needs.

This program is generously funded by a grant from Genentech, a member of the Roche Group. Cure SMA would like to extend a big thank you for their continued and ongoing contributions towards our support programs for individuals living with SMA.