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The Social Security Administration (SSA) has asked the National Organization for Rare Disorders (NORD) to identify patients or relatives of patients willing to be interviewed about the value of the SSA Compassionate Allowances program and how it has been helpful to them. As Multiple system atrophy is on the Social Security Administration’s Compassionate Allowances list NORD is asking the MSA Support Group to help find people willing to participate in the interviews. The interviews are for a short video that SSA will be creating for an upcoming event on Capitol Hill. This is a great opportunity to create awareness about multiple system atrophy.

Is the Social Security Administration’s Compassionate Allowances Helping You?

It’s very important for the MSA community to show that the Compassionate Allowances Program is making a difference in the lives of real people. Therefore, if you know of a patient or family member who has applied for Social Security assistance through the Compassionate Allowances Program, and feels that the program was helpful and would be willing to be interviewed on that topic, please contact Mary Dunkle at NORD via email as soon as possible with information about how to contact the patient/family member and a brief description of how the program was helpful. You can also call Mary at (203 744-0100 ext. 217).

Deadline is November 2, 2012

Since the video will be shown at an event in early December, we need to move quickly on this. Our deadline for getting names and brief patient stories to SSA is Nov. 2. Since the interviews will need to be done in a short time frame, it would be ideal if patients could be identified who live within easy travel distance of Washington DC. However, the video crew would be able to travel farther to interview a patient/family member with a compelling story.

Here is a link to a description of the Social Security Administration’s Compassionate Allowances Program and the current list of diseases.

Thanks very much for any help you can provide on this.