ALS WORLDWIDE is a non-profit organization that provides support to ALS families internationally through scientific research interpretation, individual patient advocacy and community activism.
What began as a family affair has evolved into a fully realized organization that supports ALS patients and their families. Patients easily navigate through the scientific jargon and medical terminology translated into layperson’s terms. Treatments and pharmaceuticals that offer immediate benefit to ALS patients are explained fully. Conferences and symposia are attended and discussed in detail.
Individual patient advocacy is an integral part of ALS WORLDWIDE. Email, telephone contact, and in-home visits assist in combating the isolation that many patients experience. Emotional support for the overwhelming devastation experienced by entire family units is an integral component. The myriad of issues that confront families are met with support and compassion.
Advocacy includes involvement in Patient Assistance Programs for experimental drugs and treatment procedures. Ongoing communication with pharmaceutical manufacturers, foundations, government agencies and private donors is an essential component. Patient assistance includes negotiating with insurance companies for coverage for cross prescribed drugs and financial assistance for drugs that would otherwise be unaffordable.
Public awareness is vital. Significant funding for research is essential. Government support for Stem Cell Research and Development and patient in–home care is of paramount importance. Once ALS is understood and conquered, the mystery behind many other neurological diseases will be solved.