Monday, March 31, 2008
MAN, I NEEDED TO HEAR THAT EMAIL THIS MORNING-I'M SO ANGRY THESE DAYS-I'M CARRYING A LOT OF GUILT FOR HAVING TO RELY ON PEOPLE. THAT IS MY EGO WRITING CHECKS MY BODY CAN'T CASH. AGAIN
Sunday, March 30, 2008
CHECK THE VIDEO OUT
MIKKO FROM FINLAND-A FRIEND
Saturday, March 29, 2008
"We must let go of the life we have planned, so as to accept the one that is waiting for us."
Friday, March 28, 2008
if someone wants to help you, accept it.
if you need help, ask for it.
if you lack joy, seek it.
do not try to hide from death or you will become invisable to life as well.
by joyce thompson, author
IT'S A VERY HARD LOOK AT WHAT WE PALS ARE FACING. HE'S DOING A GREAT THING BUT I BROKE DOWN WATCHING THE VIDEO. IT'S NOT REALITY IT'S ACTUALITY.
Most of you probably know that I have been working on two projects - one in MA and one in GA - to create a ALS group home that will support people on a vent. Not only support a vented person, but provide the kind of residential living environment that makes the decision to go on a vent a no-brainer.The MA project has a big head start in that I found people who shared my dream who were well on the way to making it happen. Barry Berman is an out-of-the-box nursing home director who realized that, as good as his facilities are, the needs of a younger, disabled person will NEVER be met in a traditional senior center. With enormous support from the MA-ALSA, this project is 80% financed, architectural plans near completion, land owned, permitted, and ready to break ground this year.There will be two ALS residences in an urban mid-rise condo building. Each house will have 10 private bedrooms, each with their own private bathroom, organized around a central living room and accessible kitchen. Each resident will have the option to cook for themselves or have a live-in chef cook-to-order. We are teaming with UMASS-Lowell engineering so that each resident will have a custom fit communication and mobility package created that will offer the latest technology (Eye-gaze, Tobii) so that the pALS can regulate the climate controls within the bedroom, open and close doors, call the elevator, select the desired floor, etc, all from the computer on their wheelchair. Each room will have a track hoist system that will provide access to 100% of the bedroom and bathroom. Oxygen will be piped into every room for those that need it. Most importantly, when necessary to go on a vent, you don't get kicked out. All 20 rooms will have vent support provided.It doesn't stop there. Upon exiting the elevator on the ground floor, residents will spill onto "Main Street", not a lobby. There will be coffee shops and cafés, courtyards and gardens, and transportation available upon request to go to downtown Boston, the Boston Common, or any other desired destination. Friends and family are encouraged to visit and will be welcome to stay over for a night or two or three...So far, the facility itself is paid for. There is another $5 million needed for the ALS upgrades. To this end, there is a major gifts campaign underway to cover these costs. The video linked below is to be used in this fund-raising effort. As you will see, I am honored to help in this endeavor by using my past experience as an architect to consult with the project architect to make sure our unique needs are uniquely addressed.Hope comes from many places. Never give in to fear because good things are happening all the time. I like something Barry says - our first goal is to get this residence built; our second goal is to not need it anymore and close it down.Massachusetts, almost done. Next up, Georgia.
Wednesday, March 26, 2008
Possible New Treatment Strategy For Muscular Dystrophy/ALS
Main Category: Muscular Dystrophy / ALS
Also Included In: Liver Disease / Hepatitis; Biology / Biochemistry; GeneticsArticle Date: 18 Mar 2008 - 2:00 PDT
An investigational antiviral drug currently undergoing human trials in Europe for treating Hepatitis C infections may have potential to reduce muscle cell damage in Duchenne and other forms of muscular dystrophy (MD). A research team led by Cincinnati Children's Hospital Medical Center reported their results using three different mouse models of MD in a letter posted online March 16 by the journal Nature Medicine. The investigational drug, Debio-025, is a known inhibitor of the protein cyclophilin D, which regulates the swelling of mitochondria in response to cellular injury. Researches decided to test the drug in mice engineered to carry MD after earlier laboratory tests showed deleting a gene that encodes cycolphilin D reduced swelling and reversed or prevented the disease's muscle-damaging characteristics. The mice were engineered as models of Duchenne muscular dystrophy and forms caused by a deficiency of two structural proteins, delta-sarcoglycan and laminin alpha2. "Similar to deleting the gene encoding cyclophilin D, we found that treatment with Debio-025 reduced mitochondrial swelling and necrotic manifestations in mice with muscular dystrophy. This is why we believe inhibiting cyclophilin D could be a new treatment strategy," said Jeff Molkentin, Ph.D., corresponding author of the study and a researcher in the Division of Molecular Cardiovascular Biology at Cincinnati Children's. "Debio-025 has already passed Phase II clinical trials in Europe and is considered safe in people, so we want to explore the possibility of conducting clinical trials in patients with Duchenne MD." During the onset of muscular dystrophy, the loss of certain proteins critical to muscle function - such as dystrophin - can lead to contraction-related micro-tears in muscle fibers and an influx of calcium around muscle tissue. When this happens, cyclophilin D is instructed to make the membranes of mitochondria more permeable. This causes mitochondria to be flooded by calcium and reorganize, swell and eventually rupture. This triggers cell death in muscle fibers and leads to the progressive muscle weakness, wasting and often early death associated with muscular dystrophy. Mice lacking the protein delta-sarcoglycan exhibited severe dystrophy and swelling in both skeletal and heart muscle. When Dr. Molkentin and his colleagues deleted the gene encoding cyclophilin D in these mice, the muscle cells returned to near normal and did not show appreciable signs of swelling and cell death. The investigators repeated the experiment with mice lacking a gene encoding laminin alpha2, which causes a more severe dystrophy, swollen skeletal muscle cells and premature death before the mice reach two months of age. In contrast, mice lacking both laminin alpha2 and cyclophilin D showed much healthier muscle cells, increased body weight and walked more. Also, 75 percent of the mice lacking laminin alpha2 and cyclophilin D lived more than three times longer than mice lacking only laminin alpha2. These findings led the research team to look for pharmacological treatments that also could inhibit cyclophilin D. The drug cyclosporine is a well-documented inhibitor of the protein, but its use is problematic because it also inhibits a protein, calcineurin, crucial to skeletal muscle cell repair after injury and to the development of skeletal muscle cells. The advantage of Debio-025 is that while it inhibits cyclophilin D and blocks cell death in a number of situations, the drug does not suppress the immune system or block calcineurin. The drug is manufactured by DebioPharm S.A. of Lausanne, Switzerland, which provided Debio-025 for use in the study. The researchers also found their study may have implications beyond skeletal muscle disease as cyclophilin D deletion reduced cardiac dysfunction caused by calcium-overload induced necrosis. This led the team to suggest that mitochondrial-dependent necrosis may also function as a common disease mechanism underlying a number of long-term degenerative disorders, something they plan to study in future research projects. Muscular dystrophies are inherited disorders that mostly affect striated muscle tissue and more commonly occur in boys. This disease results in progressive muscle weakness, wasting and in many instances death. There is no known cure for muscular dystrophy, although Cincinnati Children's is a recognized leader in disease-related research and a multi-disciplinary approach to patient treatment focused on maximizing ambulatory function and quality of life. ----------------------------Article adapted by Medical News Today from original press release.---------------------------- Also participating in the study were the Department of Molecular Genetics, Biochemistry and Microbiology at the University of Cincinnati; the Department of Anatomy and Cell Biology, University of Pennsylvania School of Dental Medicine, Philadelphia; DebioPharm S.A.; and the Department of Physiology, University of Pennsylvania School of Medicine, Philadelphia. Members of the research team include Douglas P. Millay, Michelle A. Sargent, Hanna Osinska, Christopher P. Baines, Elisabeth R. Barton, Gre'goire Vuagniaux, H. Lee Sweeney and Jeffrey Robbins. Funding support was provided by National Institutes of Health, the Jain Foundation, the Fondation Leducq and the Paul Wellstone Muscular Dystrophy Cooperative Research Center of the National Institutes of Health. Cincinnati Children's Hospital Medical Center, one of the leading pediatric research institutions in the nation, is dedicated to changing the outcome for children throughout the world. Cincinnati Children's ranks second among all pediatric institutions in the United States in grants from the National Institutes of Health. It has an established tradition of research excellence, with discoveries including the Sabin oral polio vaccine, the surfactant preparation that saves the lives of thousands of premature infants each year, and a rotavirus vaccine that saves the lives of hundreds of thousands of infants around the world each year. Current strategic directions include the translation of basic laboratory research into the development of novel therapeutics for the treatment of disease, and furthering the development of personalized and predictive medicine. Additional information can be found at http://www.cincinnatichildrens.org/. Source: Nick MillerCincinnati Children's Hospital Medical Center
Sunday, March 23, 2008
By Maggie Fox, Health and Science EditorSun
Mar 23, 2:06 PM ET
Researchers who used cloned embryonic stem cells to treat Parkinson's disease in mice said on Sunday they worked better than other cells.
The researchers were trying to prove that it is possible to make embryonic stem cells using cloning technology and use them to provide a tailor-made treatment.
But they found that a mouse's own cloned stem cells were far less disruptive to its body than cloned cells taken from other mice.
"It demonstrated what we suspected all along -- that genetically matched tissue works better," said Viviane Tabar of Memorial Sloan-Kettering Institute in New York, who worked on the study.
"When you give the other type of tissue, non-autologous tissue, you get more inflammation than we anticipated. This is in a lab animal where we expect it to be tolerant. Normally when you do this in mice, you don't give matched cells," Tabar added in a telephone interview.
The mice given non-matched brain cells did more poorly than the mice given cells from their own clones, the researchers reported in the journal Nature Medicine.
Stem cells are the master cells of the body and embryonic stem cells are the ultimate master cells, giving rise to all the other cells and tissue. Cloning researchers hope one day to be able to take a little piece of skin and grow embryonic stem cells from it for personal, tailor-made medical treatments.
One disease always named that may benefit from this technology is Parkinson's. The incurable, fatal illness is caused by the destruction of specific brain cells.
It is sometimes treated with transplants of brain cells from cadavers or aborted fetuses. Stem cell researchers have argued that cloning technology might provide a better source of cells for treatment.
Tabar and his team first created a Parkinson's-like disease in mice using chemicals to destroy their brain cells.
They took ordinary cells from the tails of the mice, transferred the nuclei from them into hollowed-out mouse eggs cells, and made clones of the mice. This process is called somatic cell nuclear transfer, or "therapeutic cloning."
The cloned embryos were harvested for their stem cells after a few days. The researchers grew these in the lab and coaxed them into becoming the so-called dopaminergic brains cells that are lost in Parkinson's.
They put these into the brains of the injured mice. These mice got better, Tabar said.
No one has done this before. "It's incredibly hard and it involves a series of inefficient steps," Tabar said.
Several researchers have made cells that look and act like embryonic stem cells by reprogramming their genes. Tabar said her team would try using these so-called induced pluripotent stem cells in the same way.
Some people oppose using cloning technology to make human embryonic stem cells, or to creating human embryos for this purpose. It is also difficult to obtain human egg cells.
Scientists hope the induced pluripotent stem cells might provide a short cut that no one would object to.
"This is an exciting step down the pathway of creating a self-specific stem cell and getting away from the ethical demands of traditional embryonic stem cells," said Richard Boyd, Deputy Director of the Monash Immunology and Stem Cell Laboratories in Victoria, Australia.
(Edited by Alan Elsner)
Saturday, March 22, 2008
Friday, March 21, 2008
HOPE ALL IS WELL
IT'S BEEN 4 WEEKS ON LITHIUM AND I'M FEELING NO SIDE AFFECTS EXCEPT FOR MY EYES BURNING. THAT IS QUITE COMMON WITH THE PALS I'VE TALKED TO. MY DR. AT COLUMBIA SAID ABOUT 1 MONTH TO GET MY BLOOD LEVELS UP TO PAR-I GO TO COLUMBIA ON THE 25TH. PEOPLE I'VE TALKED TO THAT HAVE BEEN ON IT FOR OVER A MONTH HAVE REPORTED IMPROVEMENTS. AND THERE ALSFRS-R SCORE ARE THE SAME OR BETTER. THE ALSFRS-R SCORE IS HOW ALL OF US PALS ARE MEASURED. 48 BEING THE BEST 0 BEING THE WORST. I'M AT 42-- I WAS A 47 WHEN I GOT Dx IN SEPT 06'. IT WILL BE 2 YEARS IN JUNE THAT I FIRST NOTICED MY SPEECH WAS CONSISTENTLY WORSENING. THE DR. AT YALE GAVE ME 1.5 TO 2 YEARS TO LIVE IN JULY 07' AND I LAUGHED AT HIM AND TOLD HIM-NOT ME!! NO WAY I'M LEAVING THIS EARTH WITH OUT BEATING THIS F%$3ING DISEASE. AND LIKE I SAID BEFORE, I HAVE UNFINISHED BUSINESS W/ SOME OF YOU.
YOU CAN SEE WHAT THE QUESTIONS ARE ON THE ALSFRS-R TEST BY GOING TO: http://alslithium.atspace.com/alsfrs-r.html
HEY, I FOUND OUT ONE OF THE GUYS I KNOW FROM BACK IN THE DAY HAS ALS-HE IS 38. I EMAILED HIM-WE WERE LIKE HOLY SHIT. DECEMBER 06' WAS HIS Dx. MAN IT'S A SMALL WORLD. IT'S SO SAD WHEN YOU LOOK INTO THE FUTURE AND YOU SEE PEOPLE THAT ARE FURTHER ALONG IN THERE IN THE Dx. EVERYONE ENDS UP THE SAME WAY. AND WE PALS KNOW HOW THIS MOVIE ENDS. IT'S SCARY. BUT YOU HAVE TO LIVE IN THE DAY-RECENTLY MY FRIEND DAVE FROM MICHIGAN (A HUGE HOCKEY FAN AND PLAYER) SENT ME A BOOK AND A CD OF A PRIEST WHO HAS HAD ALS FOR 7 YEARS. HE PREACHES THAT THE FUTURE HOLDS NO GUARANTEES AND THAT WE SHOULD LIVE IN THE DAY. MAKES SENSE! THANKS DAVE.
LIVE- LAUGH AND HUG SOMEONE
Thursday, March 20, 2008
Being on the tightrope is living; everything else is waiting.
In walking a tightrope, a person has to learn to relax while going forward in a situation filled with risk. If he is tense and keeps his body rigid, he will lose his balance and fall. But if he stays relaxed and keeps his muscles loose while remaining very focused, he can continuously respond and readjust his balance while walking. Then he will experience the exhilaration of success
THIS IS A LINK FOR THE USE OF HONEY AS A SOURCE FOR HEALING A BUNCH OF DIFFERENT WOUNDS/DISEASE'S
A new treatment with bee venom therapy in Franc... (more)
Added: March 09, 2008
A new treatment with bee venom therapy in France, is used to reduce the development of the ALS and PLS disease but also arthritis. A new treatment with bee venom therapy in France, is used to reduce the development of the ALS and PLS disease but also , arthritis pain and MS (less)
Added: March 09, 2008
Tuesday, March 11, 2008
-You don’t have to be no billionaire to get a ticket up to the moon
-We all know somebody up there
-You need a helping hand, look I’m right here--to help you see clearly now
-To help you see clearly now
US Upholds 2 More Stem Cell Patents
By RYAN J. FOLEY - 5 hours ago
MADISON, Wis. (AP) - The U.S. Patent and Trademark Office has upheld a second and a third University of Wisconsin-Madison patent covering embryonic stem cell research at the school.
In rulings made public Tuesday, Federal examiners confirmed two patents for scientist James Thomson's work on isolating embryonic stem cells of primates and humans. The patent office last month upheld another patent stemming from the work, but that ruling can be appealed.
Thomson in the 1990s became the first researcher to isolate the embryonic stem cells of primates and humans, which have great medical potential because they can turn into any type of cell in the body.
Two consumer groups and some scientists had said Thomson's work was obvious, given previous research on animals, and therefore ineligible to be patented. The examiners rejected that argument in the latest rulings, which cannot be appealed.
All three of the patents - issued in 1995, 1998 and 2001 - are held by the Wisconsin Alumni Research Foundation, a nonprofit that manages the university's patents.
The rulings mean the foundation will continue to control primary intellectual property rights to embryonic stem cell research in the United States. If that research leads to successful medical products or procedures before the patents expire in 2015, the school could win royalties.
The Foundation for Taxpayer and Consumer Rights and the Public Patent Foundation, which asked the patent office to throw out the patents in 2006, argued that their enforcement slowed U.S. stem cell research and drove some investment overseas.
The foundation agreed last year to waive some fees to encourage more industry-sponsored research and allow researchers to share their cells for free.
The foundation's stem cell affiliate has shipped cells to more than 560 researchers around the world since 1999. A vial of 6 million stem cells now costs about $500 for academic researchers.
Saturday, March 8, 2008
THE PLACES I HAVE RECEIVED HITS/EMAILS FROM HAVING MY BLOG-IT HAS BEEN INCREDIBLE-TO TOUCH SO MANY LIVES-IT MAKES IT ALMOST WORTH HAVING MY CHALLENGE (I WOULD RATHER NOT HAVE IT-BUT IT IS WHAT IT IS AND I'M EVER SO GRATEFUL). MY FRIENDS-PHIL & BARB AND MIKE, DONNA AND RYAN IN CANADA ARE ALWAYS IN TOUCH AND MY FRIEND FROM BRAZIL-HUMBERTO AND BORIS FROM MALDOVA AND CINZIA FROM ITALY. MIKE FROM ENGLAND AND MY FRIENDS FROM DOWN UNDER-MIKE & SHELAGH AND JODY & HAZEL. AND ALL OF YOU IN THE UNITED STATES-DAVE IN MICHIGAN AND ALL OF YOU IN STAMFORD, CT.
THANK YOU FROM MY HEART....
THIS IS ONLY IN THE PAST WEEK.......
35 GermanyFreiburg, Baden-Wurttemberg
United States Jersey City, New Jersey
Canada Charlottetown, Prince Edward Island
South Africa-Pretoria, Gauteng
United States-Oshkosh, Wisconsin
United Kingdom-Leigh, Lancashire
United States-Wyoming, Michigan
United States-Norwalk, Connecticut
Canada-Kensington, Prince Edward Island
Lithuania-Vilnius, Vilniaus Apskritis
United States-New York
United States-Stamford, Connecticut
United States-Fort Wayne, Indiana
Canada-Abbotsford, British Columbia
United States-Lawrence, Kansas
United States-Stamford, Connecticut
United States-Wyoming, Michigan
United States-spanola, New Mexico
United States-Chelmsford, Massachusetts
United States-Virginia Beach, Virginia
United States-Kearny, New Jersey
United States-Savannah, Georgia
United States-Stamford, Connecticut
Canada-Victoria, British Columbia
United States-Tunkhannock, Pennsylvania
HOPE ALL IS WELL.
IT'S BEEN THREE WEEKS ON LITHIUM AND I'M FEELING NO SIDE AFFECTS EXCEPT FOR MY EYES BURNING. THAT IS QUITE COMMON WITH THE PALS I'VE TALKED TO. MY DR. AT COLUMBIA SAID ABOUT 1 MONTH TO GET MY BLOOD LEVELS UP TO PAR. PEOPLE I'VE TALKED TO THAT HAVE BEEN ON IT FOR OVER A MONTH HAVE REPORTED IMPROVEMENTS. AND THERE ALSFRS-R SCORE ARE THE SAME OR BETTER. THE ALSFRS-R SCORE IS HOW ALL OF US PALS ARE MEASURED. 48 BEING THE BEST 0 BEING THE WORST. I'M AT 42-- I WAS A 47 WHEN I GOT Dx IN SEPT 06'. IT WILL BE 2 YEARS IN JUNE THAT I FIRST NOTICED MY SPEECH WAS CONSISTENTLY WORSENING. THE DR. AT YALE GAVE ME 1.5-2 YEARS TO LIVE IN JULY 07' AND I LAUGHED AT HIM AND TOLD HIM-NOT ME!! NO WAY I'M LEAVING THIS EARTH WITH OUT BEATING THIS F%$3ING DISEASE. AND LIKE I SAID BEFORE, I HAVE UNFINISHED BUSINESS W/ SOME OF YOU.
YOU CAN SEE WHAT THE QUESTIONS ARE ON THE ALSFRS-R TEST BY GOING TO:
HEY, I FOUND OUT ONE OF THE GUYS I KNOW FROM BACK IN THE DAY HAS ALS-HE IS 38. I EMAILED HIM-WE WERE LIKE HOLY SHIT. DECEMBER 06' WAS HIS Dx. MAN IT'S A SMALL WORLD. IT'S SO SAD WHEN YOU LOOK INTO THE FUTURE AND YOU SEE PEOPLE THAT ARE FURTHER ALONG IN THERE IN THE Dx. EVERYONE ENDS UP THE SAME WAY. AND WE PALS KNOW HOW THIS MOVIE ENDS. IT'S SCARY. BUT YOU HAVE TO LIVE IN THE DAY-RECENTLY MY FRIEND DAVE FROM MICHIGAN (A HUGE HOCKEY FAN AND PLAYER) SENT ME A BOOK AND CD OF A PRIEST WHO HAS HAD ALS FOR 7 YEARS. HE PREACHES THAT THE FUTURE HOLDS NO GUARANTEES AND THAT WE SHOULD LIVE IN THE DAY. MAKES SENSE! THANKS DAVE.
Tuesday, March 4, 2008
Brazil court to rule on stem cells
By STAN LEHMAN, Associated Press Writer2 hours, 7 minutes ago
Brazil's Supreme Court is set to decide if scientists in Latin America's largest country can conduct embryonic stem cell research, which many say can lead to cures for degenerative diseases such as Parkinson's and Alzheimer's.
The court's 11 justices are scheduled to rule Wednesday on a 2005 petition by then-Attorney General Claudio Fontelles, who argued that a new law allowing embryonic stem cell research was unconstitutional because it violates the right to life.
The law opened the way for research with embryos resulting from in-vitro fertilization that are frozen for at least three years.
"Brazil has the potential to be a significant leader in this field," said Bernard Siegel, the executive director of the Florida-based Genetic Policy Institute. "And if the Supreme Court decides to allow this kind of research, then Brazil will become the Latin American leader in this field."
He said Brazilian scientists have done "pathfinding" work with adult stem cells for the treatment of cardiovascular diseases and Type 1 diabetes. If given the green light to use embryonic stem cells, "then there is no reason why they won't be able to make important breakthroughs," he added.
Roman Catholic Church officials have urged the court to ban such research because the process results in the destruction of embryos, which it and other groups say ends human life.
"Our position is not against science," Archbishop Geraldo Lyrio Rocha, president of the National Conference of Brazilian Bishops, said last week. "It is in favor of life."
He noted that the church supports adult stem cell research, which he described as "ethically acceptable."
Adult stem cells, which are harvested without destroying an embryo, can be used to recuperate damaged tissue. But scientists say they are less flexible than embryonic stem cells, which can develop into different types of cells.
"Adult stem cells are excellent and have generated a lot of valuable knowledge," said Mayana Katz, a University of Sao Paulo geneticist. "But embryonic stem cells are more powerful and offer many more possibilities to find cures for diseases like Parkinson's and Alzheimer's."
She said that while embryonic stem cell research is legal, scientists have put most projects on the back burner pending the Supreme Court's ruling.
"We want the chance of conducting the kind of research being done in developed countries like Great Britain, Sweden, Japan and Israel," she added.
Meanwhile, a January survey conducted by the Public Opinion Research Institute, or Ibope, shows that 95 percent of those interviewed favor embryonic stem cell research.
Associated Press writer Marco Sibaja contributed to this report from Brasilia.
Monday, March 3, 2008
YOU SAY- -GOD SAYS
All things are possible
'I'm too tired'
I will give you rest
'Nobody really loves me'
I love you
John 3:1 6 & John 3:34
'I can't go on'
My grace is sufficient
II Corinthians 12:9 , Psalm 91:15
'I can't figure things out'
I will direct your steps
Proverbs 3:5- 6
'I can't do it'
You can do all things
'I'm not able'
I am able
II Corinthians 9:8
'It's not worth it'
It will be worth it
'I can't forgive myself'
I Forgive you
I John 1:9 & Romans 8:1
'I can't manage'
I will supply all your needs
I have not given you a spirit of fear
II Timothy 1:7
'I'm always worried and frustrated'
Cast all your cares on ME
I Peter 5:7
'I'm not smart enough'
I give you wisdom
I Corinthians 1:30
'I feel all alone'
I will never leave you or forsake you
Saturday, March 1, 2008
The story is on Patty Izzo. A 12 year old diagnosed with ALS in 1999. "ALS Research Paper"
(347 KB)Denise Kurowski wrote this research paper to raise ALS awareness at her school Friend of ALS patient