MPS I, MPS II and MPS III added to Social Security’s Compassionate Allowances Program

Social Security Commissioner Michael Astrue announced on Feb. 11 the expansion of Social Security’s Compassionate Allowances program, which provides expedited review of disability applications from people with severely disabling conditions.

The National MPS Society is pleased to inform you that MPS I, MPS II and MPS III are now included in the Compassionate Allowances Program along with 37 other conditions which will become effective March 1, 2010. The program, launched under Mr. Astrue’s leadership in 2008, began with a list of 50 diseases, including 25 rare diseases and 25 cancers. This is the first expansion of the disease list.  The Social Security Administration (SSA) selected the newly added 38 conditions from those recommended during public hearings and a process of information-gathering.

In 2007 the National MPS Society was invited by Michael Astrue to participate in the public hearings.  Sissi Langford, parent of two MPS children, gave public testimony expressing the need for this service for all who are affected with MPS diseases. In May of 2009, Ernie Dummann and Barbara Wedehase met with Nancy Schoenberg, acting program director of the SSA Compassionate Allowances Program, and provided input regarding MPS and related diseases. The National MPS Society’s Legislative Committee is committed to continue working with SSA administration to ensure that all MPS and related diseases are included in the Compassionate Allowances Program.

For more information go to www.socialsecurity.gov/compassionateallowances.

Scientific protocol for treating children with severe MPS I with a combination of Stem Cell Transplantation and Enzyme Replacement Therapy at the University of Minnesota

The University of Minnesota has been a pioneer in the treatment of children with severe MPS I, also called Hurler syndrome, and other storage disorders using stem cell transplantation (i.e., bone marrow or cord blood transplantation). To date, approximately 100 transplants have been performed at the University of Minnesota for Hurler syndrome alone. More...