Advocacy

CurePSP advocated on behalf of its constituents for the Social Security Administration's Compassionate Allowances Program during a two-year period and participated in public hearings to assure that our patients were covered by this program. The Compassionate Allowances Program allows for the fast-tracking of disability claims for those who have debilitating medical conditions and need assistance faster than others. In the Fall of 2012, the Social Security Administration expanded the Compassionate Allowances Program to include PSP, CBD, MSA and ALS/PDC.

In order to achieve further benefits and services for our patients, CurePSP works with various advocacy organizations in order to educate Congress on the needs of people with PSP, CBD and other atypical Parkinsonian disorders and to help affect and change public policy. Because organizations such as the Parkinson's Action Network (PAN) and the National Organization for Rare Disorders (NORD) have an established infrastructure for governmental advocacy, developing a working relationship with them has been essential for CurePSP to improve its impact with governmental agencies such as the National Institute of Health (NIH), the National Institute of Neurological Disorders and Stroke (NINDS), the Food and Drug Administration (FDA) and Congress.

In the past, CurePSP has been involved with a variety of other advocacy activities including:

  • Participation in NORD's Rare Disease Day activities
  • Signing on to support the FAST Act (Faster Access to Specialized Treatments, HR 4132) in the House and TREAT Act (Transforming the Regulatory Environment to Accelerate Access to Treatments S 2113) in the Senate
  • Participation in education/lobbying activities on Capitol Hill regarding rare diseases and orphan drug acceleration
  • Signing on (with ten members of Congress and eleven nonprofit organizations) to request the United States Postal Service to create a Silver Ribbon Brain Disorders and Disabilities Forever first class postage stamp to help raise public awareness
  • Participation in various “forums” for nonprofit organizations at the NIH and FDA