Wednesday, October 17, 2007


Housee of Representatives Votes to Create National Registry for Lou Gehrig’s Disease!

(Live web feed)

The House of Representatives took a major step in the fight against Lou Gehrig’s Disease on October 16 when it passed The ALS Registry Act (H.R. 2295) by an overwhelming 411-3 vote. The legislation would establish the first ever national patient registry of people with Lou Gehrig’s Disease, or amyotrophic lateral sclerosis, to be administered by the Centers for Disease Control and Prevention. The registry would collect information leading to the cause, treatment and cure of the deadly neurological disease that took the life of baseball legend Lou Gehrig in 1941. “This is a tremendous victory for people with ALS and their families across the country,” said Steve Gibson, vice president of Government Relations for The ALS Association. “With today’s vote, the House of Representatives has made it clear that our nation is committed to finding a treatment and cure for ALS.” It has been more than 65 years since Lou Gehrig lost his life to ALS. Although more is known about the disease today, there is no known cause or means of prevention, nor is there an effective treatment or a cure. In fact, the prognosis for a person living with ALS today is nearly the same as it was for Gehrig: death in an average of two to five years. “Unfortunately, families across the nation face the challenges and experience the suffering associated with ALS every single day,” said U.S. Representative Eliot Engel (D-NY), who introduced the ALS Registry Act and whose grandmother, Dora Engel, is believed to have succumbed to ALS. “The establishment of a registry will bring new hope to thousands of patients and their families that ALS will no longer be a death sentence.” The ALS Association worked closely with Congressman Engel and Congressman Lee Terry (R-NE) to introduce the ALS Registry Act. “Representatives Engel and Terry have led the fight for the ALS Registry Act,” said Gibson. “Their leadership in building support for bill, combined with the tremendous grassroots outreach of advocates from across the country, led to today’s historic bipartisan vote. People with ALS can be reassured that Congress has heard their message loud and clear.” Gibson noted that the bill also will benefit our nation’s military veterans. “Although ALS can strike anyone, regardless of their age, gender, race or nationality, recent studies have shown that the disease strikes military veterans at approximately double the rate as the general population. A national registry will enable us to learn why our veterans are at greater risk of ALS so that we can take action to help them and to protect the lives of our heroes serving in the military today.” The ALS Registry Act enjoyed broad bipartisan support leading up to the vote as more than 275 Representatives had cosponsored the legislation. During debate on the bill, Members of Congress praised the work of The ALS Association and the advocates who have shared their stories and put a face on the disease. “I would like to thank the tireless efforts of The ALS Association and advocates in educating and advocating for a cure, which is what we all want,” said Representative Vito Fossella (R-NY). “We need to give scientists the tools they need to find the treatment and cure for ALS. The registry does just that.” Congresswoman Stephanie Herseth (D-SD) related the story of her visit with the Thorson family who had made the trip to Washington, DC for The ALS Association’s Advocacy Day in May 2007. “I was struck by their 12-year-old granddaughter, Elizabeth, who sees how the disease has affected her grandfather and sees her grandmother caring for him. Elizabeth wrote an essay for school entitled, ‘If I Had a Million Dollars, What Would I Buy?’ And Elizabeth dedicated her entire essay to buying supplies for her grandfather, funding research, and advocating to Members of Congress,” said Rep. Herseth. She continued, “By establishing a national ALS registry…we can help facilitate the efforts of so many across the country, like Elizabeth, like the scientists searching for a cure, who are working to conquer ALS and bring comfort to those afflicted with it.” Congressman Lee Terry, the lead Republican sponsor of the ALS Registry said “I am moved every year when I am visited by patients and their families in my Washington office. Despite the extremely challenging medical conditions faced by these patients, they make an extraordinary effort to travel to the Capitol and share their stories in the hope that we will soon find effective treatments and a potential cure so that no one like them will have to suffer in the future. The courage shown by ALS patients, as well as their families, is inspiring to me.” And it was the personal stories of people with ALS that also inspired Representative Patrick Murphy (D-PA), who spoke of Shelbie Oppenheimer, a person with ALS who testified before Congress during the ALS Association’s Advocacy Day in 2002. “This fight is personal for me, as my good friend Shelbie Oppenheimer, and her husband Jeff have long been advocates for those with ALS,” said Murphy. “Jeff and Shelbie, along with their daughter Isabel, are a constant inspiration to me and I join them in the fight to turn ALS from a disease to a memory.” Representative Engel concluded, “I wish to express my gratitude to the staff of the Centers for Disease Control and Prevention, and in particular to The ALS Association, who worked for months with me and my staff to improve the bill we had introduced in the previous 109th Congress.” “I urge swift passage of the ALS Registry Act, H.R. 2295, today.” Senate Majority Leader Harry Reid (D-NV) has introduced companion legislation (S. 1382) in the US Senate where a bipartisan majority of 58 Senators have cosponsored the bill. “We hope that the Senate will follow the House’s lead and pass the ALS Registry Act as soon as possible,” said The ALS Association’s Gibson. “People with ALS don’t have time to wait.” The Association is the only national not-for-profit health agency dedicated solely to the fight against ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease). The ALS Association is fighting on every front research, patient and community services, public education, and advocacy to improve living with ALS. The mission of The Association is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. Video footage of Congressman Eliot Engel’s remarks on the House floor is available here <> and the text of the debate that preceded the vote is available here <> . <>

Saturday, October 13, 2007

Sad News

Here is a couple of photos of my friends-Claudio and Cinzia

Hey All,

I received an email from my friend Cinzia from Switzerland informing me of the passing of my dear friend Claudio. He was suffering from ALS but he died from a tired heart(heart attack). When I met him for the first time I had no idea he had the same thing as me. But I had a feeling. Well, when I found out he had ALS I started to well up and I had this feeling of overwhelming fear. I pictured in my head, this is how I'm going to end up. But that's the harsh reality of what this F%#@IN disease does. Claudio was a real fighter(4 long years he battled)-when diagnosed, he was 34 and he passed at 38. Before that Claudio was healthy in every way. He received stem cells 4 different times with improvements! Hope is just around the corner w/ stem cell therapy! That is why I am going back! Again.-WHATEVER IT TAKES!

Here the email I received from my friend Cinzia:

Hello dear Drew, how are you? Did you improve since you went home from China? I Hope yes. Tell me everything please! Sometime I look pictures with you. It makes me happy. Something sad happened here. Claudio is not in this world from September 3, the day he decided to fly to the sky near the Angels. He is an important and beautiful Angel right now and he will see and give us a lot of love from his comfortable cloud. It wasn't his sickness, but his very tired heart. He will make you stronger, to tell everyone that stemcells are the future of your life and the life of everyone who is sick. I hope you can understand my english. The picture is a present for you and for your sister. Say hallo to her. So , I hug and I kiss you so strong and please, be in touch with me again. Love, Cinzia

Monday, October 8, 2007

Daily Wisdom from a Friend

Never deny a diagnosis, but do deny the negative verdict that might go with it.

-Norman Cousins

Thursday, October 4, 2007

A recent photo

I'M A NATURAL.....This cute baby is the newest addition to our family-Andrew(love that name) Charles Schemera(it's my cousin's Richard and Barbara's baby)
--click on the photo to enlarge it--

Tuesday, October 2, 2007


I recieved this comment and I don't know who sent it! Can anyone tell me-just email me

Anonymous said...
I Love You.
September 21, 2007 2:01 PM

Thought and results

Hey there,
Hope you are well. 33 days and counting to Beijing!!

I slept at the Yale Sleep Clinic on Sunday. It was a test to measure how much oxygen I am getting to my blood when I am asleep. When I am awake I am very in-tune to how I breathe. But when I am asleep I rely on my brain to send down the signal to my diaphragm to expand and contract, essentially to breathe but as you know know with my challenge the signal is sent but there could be no one home to receive it! My point being, I do not expand or contract enough to get right amount of air when sleeping they(doctors) thought. The test came out normal! You should have seen me-I had electrodes pinned to every part of my body and they watched through a camera my every move-and I DON'T snore(some-they beg to differ!!).

Here is an interesting article-it's long but please read it!

Why Michael J. Fox Is Wrong
Date: Mon Oct 1, 2007 7:26 pm ((PDT))

Why Michael J. Fox Is Wrong
The fast approaching of the mid term elections bring all the special
interest champions out into the limelight. Advocates for special
interests ranging from the environment to animal rights all view the
political process as a means to advance their causes. Chief among these
media darlings dedicated to a social agenda is Michael J. Fox.

Mr. Fox has enabled scientists to carry out some incredible research in
regards to Parkinson?s disease (PD). The Michael J. Fox Foundation has
awarded more the seventy million dollars in scientific grants involving
more than two hundred research projects in eighteen countries.

Among the wide array of projects supported by the Fox Foundation is a
gene therapy that injects a virus with a gene produced by the team of
Dr. Raymond Bartus into the brain. The theory behind this study is hat
seeding the malfunctioning area of the brain will cause it to start
producing Dopamine. Dopamine is a hormone like neurotransmitter.

The Cleveland Clinics: Glossary of Parkinson’s disease Terms
defines Dopamine as;

A chemical produced by the brain; it assists in the effective
transmission of messages from one nerve cell to the next. People with
Parkinson’s have decreased amounts of the chemical in the basal
ganglia and substantia nigra, two structures located deep in the brain.
Dopamine coordinates the actions of movement, balance, and walking.

Another study at the University of Florida supported by the Fox
Foundation is led by Dr. Christine Sapienza. This group of scientist are
working on curing a symptom of PD, that of difficulty swallowing. This
may seem trivial at first blush until you learn that the leading cause
of death in a PWP (Person with Parkinson’s) is aspiration
pneumonia. Water leaking into the airway causing infection, pneumonia
and death.

In Beijing China compounds found in green tea are being study in the
event that they may slow the progression of PD. Again supported
financially by the Fox Foundation.

Parkinson?s disease is a very highly misunderstood disease. There are an
estimated one and a half million people in the United States suffering
from PD. It is a degenerative neurological disorder that affects the
Dopamine producing area of the brain. This loss of Dopamine can cause at
rest tremors, a slowness of movement, rigidity of trunk and limbs and
impaired balance. These are only the main symptoms of PD with dozens of
secondary symptoms. PD is a quietly devastating disease.

Mr. Fox has joined the political process to promote Stem Cell research,
specifically Embryonic Stem Cell Research (ESCR). Mr. Fox and our media
have bought into the claims of certain members of the scientific
community that embryonic stem cells are the great panacea, the magic
bullet, and a cure all solution. Fact is not a single therapy has been
developed using Embryonic Stem Cells.

Diana Kapp in The $3 Billion Cell Job states [1] ?Not a single embryonic
stem cell has ever been tested in a human being, for any disease.?

Read what she says carefully, not only are their no therapies using
ESCR, but no research project has progressed to the stage of testing on
humans. This after twenty five years of research and testing on
embryonic stem cells obtained from mice.

Stuart Newman, Professor of Cell Biology and Anatomy, New York Medical
College wrote [2] ?there had been essentially no progress in curing or
even palliating disabling conditions for which mouse ?models? existed,
such as diabetes, spinal cord injury, Parkinson?s and so forth.?

No progress towards a cure for diabetes, spinal cord injury or PD, not
even to relieving the symptoms of these tragic disabling conditions.
Neither a single cure nor relief of the any of the symptoms associated
with these diseases.

A leading advocate of ESCR when asked how long it will take for
embryonic stem cell based therapies to be ready, gives the following
answer [3] ?My answer is five years,? he said. ?It’s the same
thing as saying I have no idea.?

That is about as honest an answer as you are likely to find in the
debate over ESCR. As honest as it is telling, no one really can say
definitively that ESCR will produce a cure in the next several decades,
or even if one can be produced.

Quoting Mr. Fox in an interview with Katie Couric on April 16 of 2006
?not all politicians are on the same page as scientists.
Parkinson’s experts believe in stem cell research as a promising
prospect for a cure. But the source of those cells ? human embryos
â€" touches a sensitive nerve in the nation’s capitol.

Either Mr. Fox is not being entirely truthful or he does not fully
comprehend the claims he makes in the above statement. He implies that
all scientists are in agreement with his belief that ESCR is the next
great cure all. That politicians, specifically those in Washington are
to be blamed for its lack of progress.

A case against this point of view can be made from a letter written
during the 2004 Presidential election by fifty-seven noted research
scientists and physicians. The signatories coming from such renowned
research facilities as the Mayo Clinic, Georgetown Medical School ,
Harvard Medical School, and the National Cancer Institute. In this
letter written to the Kerry - Edwards campaign regarding their
statements on ESCR; these same scientists accuse the campaign of being
irresponsible, dangerous and misleading.

Third, the statements you have made regarding the purported medical
applications of embryonic stem cells reach far beyond any credible
evidence, ignoring the limited state of our knowledge about embryonic
stem cells and the advances in other areas of research that may render
use of these cells unnecessary for many applications. To make such
exaggerated claims, at this stage of our knowledge, is not only
scientifically irresponsible ? it is deceptive and cruel to millions of
patients and their families who hope desperately for cures and have come
to rely on the scientific community for accurate information. (Ad-hoc
group of Scientists Letter to the Kerry ? Edwards Campaign October 27th

After chastising the political campaign of Kerry-Edwards the letter
continues on to describe how research and treatment of non-controversial
adult stem cells have already treated and cured thousands of dozens of

Non-embryonic stem cells have been discovered in many unexpected tissues
? in blood, nerve, fat, skin, muscle, umbilical cord blood, placenta,
even dental pulp ? and dozens of studies indicate that they are far more
versatile than once thought. Use of these cells poses no serious ethical
problem, and may avoid all problems of tissue rejection if stem cells
can be obtained from a patient for use in that same patient. Clinical
use of non-embryonic stem cells has grown greatly in recent years. In
contrast to embryonic stem cells, adult stem cells are in established or
experimental use to treat human patients with several dozen conditions,
according to the National Institutes of Health and the National Marrow
Donor Program (Cong. Record, September 9, 2004, pages H6956-7). They
have been or are being assessed in human trials for treatment of spinal
cord injury, Parkinson?s disease, stroke, cardiac damage, multiple
sclerosis, and so on.

Adult Stem Cells are plentiful, easy to obtain and come with out the
moral, ethical and medical baggage of Embryonic Stem Cells. They have
and are being used to treat ?several dozen conditions?, currently.

Again we see that the medically more advanced adult stem cells are a
superior option to those taken at an embryonic state. This is a
scientific fact. The later in the gestation period a cell has achieved
the more stable it becomes. Cells taken at the earliest or blastocyst
stage (5 to 6 days) are highly volatile, difficult to work with and
likely to cause tumors. Later in the development cycle the cell
stabilizes and becomes the type of cell it was designed to be.

Mr. Fox is also wrong in his perception of what pro life is and what is
not. Again a quote from the Katie Couric interview, Mr. Fox in response
to a question about the ?millions of Americans who find the concept of
destroying embryos immoral? :

I would say that, from my opinion, it’s an amazing pro-life thing
to do to take those cells and to endeavor to improve the lives of
millions and billions of people that are alive now and will be alive in
the future by coming up with curesâ€"and treatments for diseases.

His concept of pro life and mine vary greatly. The basic premise to his
answer is that of the pro abortion movement. The idea that lives at
different stages of development are of unequal value and that some
stages are of little to no value. Another way of saying the same thing
would be that the unborn lack some thing that the new born has acquired.
This is the slippery slope we find ourselves on today, and have been
treading ever downward since Roe v. Wade.

All life, the stage of development not withstanding is valuable in the
eyes of our Creator. The Bible teaches that men and women were created
in the image of God

So God created man in his own image, in the image of God he created him;
male and female he created them. Genesis 1:27 (NIV)

Combined with the instruction of the 5th commandment delivered to Moses
in Exodus 20:13 “You shall not murder. (NIV)

This makes it imperative that we are to protect life, from its very
beginning to its natural end. Life is sacred gift. This truth is
unrelated to situation or circumstance. Destroying a human embryo is
destroying a living human being. Any middle school biology student know
that life beings when the cell divides. ESCR destroys a human being.
Michael J. Fox knows this. The scientist proponents of ESCR know this.
They have their own reasons for pushing their agenda.

As a fellow PD patient myself, my outlook on life and its sanctity are
very different from that of Mr. Fox. I have learned to look for the
blessing in all things, even PD. It is the difference between a post
modern worldview and a Christian worldview. When one learns that God is
sovereign and allows nothing that can not be used to His glory to
happen, it gives life a new meaning.

Stem Cell Research can be beneficial to human kind when done properly.
It can be extremely destructive when done outside the bounds of
propriety. We must put aside our personal agendas and educate one
another to the facts. Stem Cell Research on Adult stem cells provides
great promise of even more therapies and treatments in the near future.

In conclusion I want to address Mr. Fox directly by saying, Michael you
have done great things with your foundation, all in your own strength.
However you will never find true happiness or peace until you come to
accept Jesus Christ as the Lord of your life. It staggers my imagination
what you could accomplish were you only acting in His will and not your
own. As the Apostle Paul writing from a Roman prison cell explains it;

I know how to be brought low, and I know how to abound. In any and every
circumstance, I have learned the secret of facing plenty and hunger,
abundance and need. I can do all things through him who strengthens me.
Philippians 4:12-13 (ESV)

I will pray that you God gives you Michael the wisdom to discern the
truth regarding the destruction of embryos and the sanctity of human
life. That he will soften your heart and that you will choose to let Him
in. That you will continue to do His work, His way.
All in the name of Jesus, Amen