The Litvan Neurological Foundation
The Litvan Neurological Research Foundation, Inc. (LNRF) was established to strive for the discovery of a cure for patients with neurodegenerative disorders presenting with Parkinson's disease, atypical Parkinsonian disorders, or dementia symptom. This was its website, until the sites domain's registration expired and litvanfoundation.com disappeared from the web. The information posted on litvanfoundation.com was considered important enough for the Web Archive Project to award a grant to cover the cost of restoration. Bob Sakayama, CEO of TNG/Earthling contributed his teams development resources to the project which enables this restoration to remain live for use by educators and historians. This archive has become part of the reading materials used for college level courses worldwide and represents a historic reference point for advances in the the cure of neurodegenerative disorders and treatments for related conditions.
The vision of the LNRF is to become a national resource for patients, caregivers, and families affected, as well as for researchers studying these disorders.
The foundation was founded in honor of Marcos Litvan, father of Irene Litvan, M.D.
This foundation was created in memoriam of my dad and all those who always fought for advances in medicine, peace and justice without losing their human essence.
Marcos Litvan's (1909-1999) love for medicine, excellence and justice has been an inspiration to his children and grandchildren, who became physicians- Dr. Irene Litvan
About LNRF
The Litvan Neurological Foundation, Inc. (LNRF) was established to increase awareness, determine the cause/s and search for a cure for neurodegenerative disorders presenting with either parkinsonian or dementia symptoms. Our vision is to be a national resource for disorders not usually funded by the existing Parkinson's Disease and Alzheimer's Disease associations.
The LNRF was established in 2002 as a non-profit 501 c foundation. Dr. Irene Litvan serves as the CEO of the LNRF. It currently pursues its mission through the clinical, outreach, education and academic research.
The LNRF focuses its resources on the less understood atypical parkinsonian and dementia disorders. As understanding and funding for these diseases is limited, the vision of the LNRF is to be at the forefront of research on these devastating diseases. Layman and scientific education of university students, residents, fellows and professors on the diagnosis and management of patients with these disorders is also a top priority.
The LNRF was founded in memory of Marcos Litvan 1909-1999, whose unfulfilled desire to become a physician, inspired his children and grandchildren to excel in their chosen medical professions. His love for humanity, charismatic persona, and generosity continue to live in all those who he touched. This foundation was created in memoriam of Marcos Litvan and all those who fight for advances in medicine, peace and justice without losing sight of the human essence.
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SP, CBD, MSA, ALS/PDC Approved for Social Security Compassionate Allowance
TIMONIUM, Maryland, October 14, 2011 – The Social Security Administration (SSA) has approved four new rare diseases to now qualify for Compassionate Allowance (CAL):
- Progressive Supranuclear Palsy (PSP)
- Corticobasal Degeneration (CBD)
- Multiple System Atrophy (MSA)
- Amyotrophic Lateral Sclerosis/Parkinsonism-Dementia Complex (ALS/PDC)
Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.
Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.
CAL conditions are developed as a result of information received at public outreach hearings, comments received from the Social Security and Disability Determination Service communities, counsel of medical and scientific experts, and our research with the National Institutes of Health (NIH). Also, SSA considered which conditions are most likely to meet current definitions of disability.
Commissioner Astrue has held seven Compassionate Allowances public outreach hearings. The hearings were on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer's disease and related dementias, schizophrenia, cardiovascular disease and multiple organ transplants and autoimmune diseases.
The SSA's decision to include these neurodegenerative disorders was based on the clinical information which CurePSP and its medical experts have provided over the past couple of years, as well as the active advocacy of CurePSP on behalf of patients and caregivers.
PSP, CBD, MSA, and ALS/PDC will not become an active part of SSA's Compassionate Allowance until December 2011, at which point Social Security plans to begin accepting applications.
CurePSP is working with SSA’s Office of Disability Programs to develop instructions, documents, articles, webinars, and other information to inform the public about the program and facilitate the application process.
CurePSP is the foremost organization dedicated to curing PSP, CBD, and related brain diseases. Since 1997, the Foundation has awarded over 125 PSP-related research grants totaling more than $9 million.
CurePSP’s mission is to increase awareness of progressive supranuclear palsy, corticobasal degeneration, and related brain diseases; fund research toward cure and prevention; educate healthcare professionals; and provide support, information, and hope for affected persons and their families.
More information can be found at: www.curepsp.org/
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1st International CBD Investigators Meeting
In late October, 2009 experts in Corticobasal Degeneration from around the world met at the 1st International CBD Investigators Meeting in Baltimore, MD to discuss the development of new standardized diagnostic criteria for CBD. The attending investigators reviewed the history of pathologically confirmed CBD in order to determine the clinical features most commonly associated with the disease.
Their efforts led to the development of new criteria that includes a more standardized approach to the classic presentation of CBD, commonly referred to as Corticobasal Syndrome (CBS), which is characterized by abnormal limb posture (dystonia), arm or leg jerking (myoclonus), difficulty transforming thought into coordinated movement (apraxia), and alien limb phenomenon (in which an individual does not recognize a limb as their own).
Standard criteria were also developed for two less recognized syndromes indicative of underlying CBD: a progressive language disorder characterized by grammatical simplification, errors in speech production, and effortful halting speech; and a behavioral-spatial syndrome characterized by executive dysfunction (planning and organizational difficulty), a state of apathy, and visuospatial deficits.
Currently, the investigators are working on a manuscript to be submitted to peer-reviewed journals. Future research will include validation of these newly developed diagnostic criteria through a prospective longitudinal study (pending funding).
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Irene Litvan, MD
Professor at University of California, San Diego
Location: La Jolla, California, United States
Irene Litvan, MD, is a professor of neurology, the Tasch Endowed Chair of Parkinson’s Disease Research, and director of the Movement Disorder Center at the University of California, San Diego. She has over 25 years of experience in adult neurology, movement disorders, psychiatry and epidemiology. Her research searches for a better understanding of the causes and extent of disability, as well as the development of appropriate symptomatic and neuroprotective treatments for patients with neurodegenerative disorders who present with parkinsonism or dementia symptoms. Dr. Litvan has published over 150 peer-reviewed scientific research articles and four books. She is also a member of multiple advisory boards.
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My mother suffered from Parkinson's disease for years. The last time she was able to travel I had arranged for my parents to travel to Hawaiian island of Maui and rent a Maui vacation condominium that was handicap friendly. The local Maui property management company I worked with tom arrange this special birthday holiday worked very closely with me to make sure the condo I chose would be appropriate for my parent's needs. My mother needed wheelchair accessibility, while my father wanted nearby golf courses where he could play. Plus I wanted a wonderful view and close by restaurants, shopping opportunities along with closeness to a beach. It was a magical Hawaiian vacation for both my parents. Since neurological diseases run on my mother's side of the family I was very interested in the work that Dr.Irene Litvan was doing. I was also appreciative that the LNRF focused its resources on the less understood atypical Parkinsonian and dementia disorders. The knowledge of the work and the goals of the Litvan Neurological Foundation, Inc. should remain available on the web which is why when I recently I discovered that the domain for the LitvanFoundation.com was available I bought it with the goal of recreating some of its content from archived pages. I definitely didn't want someone else purchasing the domain and re-purposing the site for something that had nothing in common with the foundation's original goals.