Sharing of Data Leads to Progress on Alzheimer’s Disease–Part 2

The need was for all researchers and experts to come together to work and evolve a standard data set. But how was this possible? It would entail an incredible collaboration as no one company or researcher could manage to do this alone. The project would involve 800 subjects with varying degrees of memory impairment; some normal, some with a little impairment, some with Alzheimer’s and all had to be tested for the biomarkers and then followed up for several years to judge whether the markers heralded the progression of the degenerative disease. It did seem an impossible project and one that was way beyond anybody’s implementation.

But in the car, Dr. Potter had an intuitive flash when he felt that this project due to its seriousness of objective and aim of ending untold suffering may well propel people to work together in a way that had never been attempted before. The concept was to make the National Institutes of Health the go-between or broker between the world of academia and the pharmaceutical industry. Very soon afterward the director of the National Institute on Aging Dr. Richard J. Hodes talked about this to the former scientific director at the National Institute of Mental Health, Dr. Steven M. Paul and the latter agreed to consult the drug companies to find ways of getting funding for the research. Soon it became clear that all these companies were ready to assist as the development of diagnostic methods was a gigantic task that no one could manage on their own. Collaboration was the need of the hour. Congress established the Foundation for the National Institutes of Health to find ways and means to garner private funds for the institutes. Dr. Steven M. Paul was appointed to the board of the foundation.

Ultimately, $ 41 million was given by the National Institute on Aging, $2.4 million was contributed by some other institutes, 2 non-profit associations and 20 organizations together managed $27 million and this became the initial seed money to get the project started and keep it going for the first 6 years. The National Institute of Aging advanced another $24 million last year and on the basis of further federal and private funding the foundation made plans for the project to continue for another 5 years.

In the beginning, the unique parameters of the project had many scientists worried as they wondered whether giving up ownership and sharing valuable data with all and sundry would result in anything positive at all. There could be misinterpretation, misuse and wrong information being disseminated that could do more harm than good. But despite the misgivings, all realized that there was no alternative to this collaborative endeavor. Even the drug companies, who were usually looked upon with suspicion, were roped in and everyone had to overcome this mental block, according to Dr. John Karlawash an Alzheimer’s researcher at the University of Pennsylvania.

Dr. Karlawash stresses the need to combine resources and work together. The need to find these valid biomarkers for Alzheimer’s was urgent and the entire process demanded such huge funding and massive research that it was impossible for any one company or academic institution to even think of embarking on the project. It had to be a collaborative exercise and now all concerned are making use of the data. The huge data set has been downloaded at least 3200 times and the data sets comprising images of brain scans have been downloaded almost a million times.

The positive outcome of the project has delighted Dr. Buckholtz who says that he is quite “pleasantly surprised” by the way it has turned out. No one was sure how this innovative concept of sharing everything in the public domain in a research project would evolve, but they were confident that ultimately there would be some good coming out of the hard work and combined research. That is how it has turned out to be and it has kindled new hope for the conquest of these diseases.

Could someone you love have Alzheimer’s? Do you have a long term plan to deal with the Medicaid issues surrounding this? Call Cohen & Oalican, LLP to draw up a plan.

Sharing of Data Leads to Progress on Alzheimer’s Disease - Part 1

A project was initiated in the year 2003 when the National Institutes of Health, the Food and Drug Administration, the drug and medical-imaging industries, universities and nonprofit groups joined hands in a joint endeavor to find the biomarkers that reveal the progress and evolution of Alzheimer’s disease in the human brain. It was a unique project in the annals of medical research and it is yielding results now, which are evident in a deluge of research papers on the subject.

Early diagnosis of Alzheimer’s is being done with PET scans and spinal fluid analysis and more than 100 drug studies are in progress to find formulations that might slow down or even cure the disease. This remarkable collaborative effort is showing the way for more such projects and a similar one has begun for Parkinson’s disease. The Michael J. Fox Foundation has sponsored a $40 million study to find the biological markers for Parkinson’s disease that will enlist 600 subjects in Europe and the USA.

The project has generated great excitement among the research fraternity as the agreement to share all data and make all findings public was something unheard of in the scientific world. Anybody with a computer anywhere can access all the data and go through the findings of all the research studies on the subject. The objective was not just to raise funds, or do research but share all the facts and figures and everything going on in the project on a global scale. There would be no ownership or patent of the data or the research finding and everything would be in the public domain. Private pharmaceutical companies would of course benefit in the long run from the drug formulations or imaging tests that were being developed during the project.

Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania is stunned by the amazing scope of the project. It is a project that is unique and path-breaking in scientific research, according to him. But it is the only way to do it, as unless we kept aside our egos and intellectual property issues, the task of finding the biomarkers for these diseases would be an impossible one, he says. It does not mean that a person having the biomarkers would definitely get the disease, but that is also part of the project. The study aims to find those biomarkers that herald the onset of the degenerative disease.

The Alzheimer ’s disease Neuro-imaging Initiative or ADNI came about during a normal conversation about 10 years ago. Neil S. Buckholtz, chief of the Dementias of Aging Branch at the National Institute on Aging was being driven to the airport in Indianapolis by Dr. William Potter who was himself a neuroscientist at Eli Lilly. Dr. Potter was seriously thinking about the ways to hasten the progress of the drug research on Alzheimer’s. He wanted to come out of the typical drug development syndrome of the 19^th century, where a drug was administered and then everyone waited around for it to work. He felt that there must be some other method, where one could view the brain as Alzheimer’s developed and then formulate drugs to halt that development. There were efforts to locate biomarkers, but there was not much progress as different scientists in many different parts of the world were doing their own studies in their universities and with their own patients. They were obviously coming up with different results due to this.

Could someone you love have Alzheimer’s? Do you have a long term plan to deal with the Medicaid issues surrounding this? Call Cohen & Oalican, LLP to draw up a plan.

New pathways to parkinson’s and alzheimer’s diseases

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New Pathways to Parkinson’s and Alzheimer’s Diseases

Cohen & Oalican, LLP share recent Alzheimer's research.

Although Alzheimer's disease, Parkinson's disease and Huntington's disease have different genetic causes and pathways, all these ailments have one thing in common. All of them cause untimely death of the brain cells and the reason that this happens has been a dilemma to the treatment of these fatal diseases.

A recent study by a group of doctors and others at the Sanford-Burnham Medical Research Institute that was published in the July 30 issue of the medical journal Molecular Cell, throws some light on this brain cell death in patients of these diseases. The sudden and untimely transfer of a gaseous molecule called NO or nitric oxide from one cell protein to another could be the answer. Earlier research had revealed that NO and other molecules were responsible for nerve cell death or survival, but in this case, NO was seen to actually move from one protein to another through new molecular channels, triggering cellular suicide.

This was explained by the senior author of the research study group and the director of the Del E. Web Center for Neuroscience, Aging and Stem Cell Research at Sanford-Burnham, Stuart A. Lipton, M.D., Ph.D. Since this molecular evidence for the untimely cell death in Parkinson’s, Alzheimer's, and Huntington's diseases has been discovered, it would be possible now to utilize this new breakthrough to diagnose, treat and hopefully prevent these illnesses in the near future. As a Harvard-educated neurologist who runs his own clinical practice, Dr. Lipton is familiar with these fatal diseases as he observes his patients.

This research study has revealed that NO molecules relocate from the caspases to the XIAP proteins; the former are proteins that usually trigger cell death while the latter inhibit it. The caspases protein throws the NO molecule away like a “hot potato” to the XIAP protein to avoid the imminent cell death and this process happens through a chemical reaction called transnitrosylation. This action brings about a dual distress for the brain cells, as these cells are programmed to self-destruct when caspases do not have NO on them or XIAP have the molecule attached to them. Either way then it is death for the brain cells, as both these fatal actions happen simultaneously. In the study, it was shown that persons with neurodegenerative diseases had the NO molecule attached to the XIAP protein more frequently than those with normal brains. This reinforced the theory that this change in protein structure brings about cell degeneration.

The research group used a new arrangement of the Nernst equation to understand and analyze whether the caspases or the XIAP protein is more likely to end up with the NO molecule. The Nernst equation is taught in every chemistry class and is a mathematical equation that was found in the 19^th century. This possible prediction of the NO attachment to the brain cell proteins may ultimately help doctors to make earlier diagnosis of these neurodegenerative ailments, thereby kindling hope for treatment and cure. Cerebrospinal fluid and brain tissue from patients suffering from Parkinson's and Alzheimer’s is being studied and analyzed to find out whether the NO-attached proteins could be utilized as biomarkers to understand the progress and evolution of these diseases.

In ongoing research based on these findings, to formulate treatment and therapy to treat these neurodegenerative ailments, Dr. Lipton and his team are using robotic technology in Sanford-Burnham's Conrad Prebys Center for Chemical Genomics. Chemicals are being screened in their thousands to discover drugs that may stop the movement of the NO molecule from one protein to another, which may soon prevent brain cell death.

Do you have a plan if nursing home care is needed for yourself or your spouse? Will your home be protected?

Call Cohen & Oalican, LLP, they will help you to protect your home and all of you savings so you can focus on your loved one.

Cohen & Oalican : MEDCottage

Cohen & Oalican, LLP discuss the medcottage

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MEDCottage or Granny Pod–Part 2

The actual name for the “granny pod” is MEDCottage and it is a type of mobile residential unit that can be rented on a monthly basis. It can be parked in your backyard, you can connect your water and electricity to the unit and it transforms into an independent room for your elderly relatives. This innovative concept is becoming quite popular all over the country, especially in the state of Virginia where the zoning restrictions have been relaxed for these hi-tech homes by the government, which are expected to be available next year.

The MEDCottage has vinyl siding on the exterior and French doors with a white trim around them, while the interiors are fully equipped with a comfortable suite of rooms, with a kitchen and toilet. In short, the MEDCottage is a complete home in itself with all amenities needed to live a safe, comfortable life and ideal for the elderly.

What makes the MEDCottage even more suitable for the elderly is that inside the unit there is state-of-the-art health monitoring equipment and a lift to take an incapacitated person from the bedroom to the bathroom. There is also a camera installed just a foot above the floor that is adequate to view the person’s feet, so if he/she fell down it would immediately be seen. It has been estimated that falls in the home are one of the primary reasons elderly people have to be taken to hospitals and nursing homes, so having this “Feet Sweep” camera would be a big help in the timely assistance in case of such accidents. In addition to these useful conveniences, the MEDCottage has lighting along the floors that would help the elderly in easy movement around the unit. There are monitoring systems that offer regular updates on the medical status of the occupant, like heart rate and temperature and also provide information about medicine intake and other details.

The thought of relegating your older relative in a separate unit in the backyard may not sit easy with most people, but Rev. Dupin says that it is in line with the independent nature of most Americans. The space of the MEDCottage with the family and yet apart is symbolic of American self-reliance and independence. It is not that we can declare loudly that we do not want our older family members in our home, but neither would they wish to live with us. The MEDCottage is an acceptable alternative where the elderly are near their family but are not stepping on anyone’s feet in the process. It is a wonderful way for the older generation to remain part of the family, enjoy the company of their grandchildren and feel safe and content, without being any sort of a burden on others.

Rev. Dupin does not think that his parents would be living in a “granny pod” but certainly visualizes a future where he might be living in the backyard of one of his children.

 

Call one of elderlaw attorneys at Cohen & Oalican, LLP Boston, Andover and Raynham to see if this fits into your  long term care plan.

MEDCottage or Granny Pod–Part 1

 

MEDCottage

One of the things that the elderly hate the most and find really upsetting is to be moved from their familiar surroundings to a hospital or nursing home. The clinical, coldblooded ambience of a medical treatment center possibly makes the older lot a bit nervous and also tentative about their future.

Priests attending to older people have commented on this feeling and also opined that it appears that closeness to family members and access to their loved ones are most important issues. There was one lady in particular about whom Rev. Kenneth Dupin had talked about when discussing this aspect of caring for senior citizens. Katie was a happy old lady living in her own home, filled with mementos and artifacts from her past and she loved to talk of the days gone by. Rev. Dupin enjoyed listening to her anecdotes when he visited her, but the entire scenario changed when Katie was shifted to a nursing home some time afterwards.

Katie’s entire demeanor and happy attitude had just disappeared, which was noticed by Rev. Dupin when he went to see her at the nursing home. She begged and pleaded to be taken back home with tears running down her cheeks. She did not get the chance to go back to her beloved home, as she passed away in the nursing home, but the entire episode had a profound effect on Rev. Dupin. He was extremely moved by Katie’s attachment to her home and her deep melancholy at being moved to a nursing home, away from her loved ones.

In a talk with Audie Cornish of the National Public Radio (NPR) he said that Katie and her emotional outpourings had left him thinking about the entire subject of elderly people and their happiness in their last days. He was seriously wondering whether there was some way whereby older people could be kept closer to their families and out of places like hospitals and nursing homes. His concern is now being addressed as a new concept called “granny pods” that is gradually becoming an alternative for the housing of the elderly.

 

In Part 2 Cohen & Oalican, LLP talk more about the concept of “granny pods” or MEDCottages. Call our attorneys to see if this is an option for you and if  Medicaid covers it.

How to Protect Your Home if You Are Admitted to a Nursing Home Part 2 & ...