Congressman Leonard Lance

Representing the 7th District of New Jersey

Lance Welcomes Shah Family of Basking Ridge and ALS Advocates To Washington

May 10, 2016
Press Release
Capitol Hill Event Renews Call for Innovation

WASHINGTON, D.C.  --- Congressman Leonard Lance (NJ-07), co-chair of the Congressional Rare Disease Caucus and member of the Energy and Commerce Health Subcommittee, hosted Amyotrophic Lateral Sclerosis (ALS) advocates for a press conference on Capitol Hill today, including Nirali Shah of Basking Ridge, New Jersey who spoke about her mother, Sonal Shah, who lost her fight with ALS in November 2015.  Lance and Shah used the gathering of ALS advocates in Washington to push for new efforts to spur medical innovation. 

We need a new way.  Right now, there is no treatment available that significantly slows or stops the progression of the disease.  That needs to change.  We need to do all that we can to speed the development of new treatments for ALS and other diseases and we need to do it now.  It is for that reason I championed the Dormant Therapies Act, to break down barriers that exist to ALS drug developments,” said Lance, who has championed the cause of public health and disease prevention in Congress.

Ms. Shah shared memories of her mother who was a passionate advocate who had helped build support for the Dormant Therapies Act during her trips to Washington for ALS Advocacy Day. Shah noted the importance of continuing her mother’s fight, saying, “Although our loved ones may not be physically with us, their legacies and dreams live within each one of us. We can take our time to mourn, cry, and celebrate their lives, but I am sure they would want us to take action. We must keep their momentum and legacy alive.”

Lance pointed out that there are potential treatments for ALS and other diseases that are not being developed.  Lance said that it is not because those potential treatments do not hold promise; rather it’s because the current system rewards the development of treatments that are easy to produce and do not take a long time to develop and bring to market.  Lance added, “It is time to create a system that rewards efficiency and effectiveness to the benefit of all persons with rare diseases by encouraging the development of drugs abandoned in the development process.”  Lance authored the MODDERN Cures Act, later renamed the Dormant Therapies Act, which would open the innovation pipeline and bring promise to those with ALS and other unmet medical needs.

Lance’s event was part of The ALS Association’s National ALS Advocacy Day and Public Policy Conference in collaboration with the National Health Council.