Parkinson’s Disease - A Call for Unity

PART 2

I do know that since that time, the emergence of literally hundreds of them continue to pop up (no pun intended.."pop up") that span the internet from AOL to MSN and Yahoo to Net Zero! In fact, the Parkinson’s community as a whole, recognizes this and realizes the benefit that the internet provides. For years, the medical community and the national PD organizations have failed to reach many people across this country and even the world to provide information, offer help and support. Millions of dollars have poured through the coffers of the Parkinson’s community and yet so many people continue to suffer emotionally, physically and financially from the crippling effects of the PD monster. My dear friends, this is a sad state of affairs.

A new day is dawning. Hope and encouragement is on the way. A true grassroots effort is underway creating a groundswell of activity among hundreds of groups and organizations whose goals and mission is to reach out to those who suffer with PD NOW in the present until a cure is found. Recent scientific news indicates that for all the progress being made toward finding a cure, much work still lies ahead. This brings me to my point that Parkinson Disease is on the increase. There are new cases being diagnosed each year and the average age seems to be younger and younger. This alarming fact should send up some red flags all over the place. Instead, the federal government continues to cut funding. In many areas of our country, private donations are decreasing and many facilities are closing. Many studies, that in the past have been attributed to success in improvements in the treatment of PD are now shutting down. My point here is not to publicize doom and gloom, but to offer a wake up call instead to the entire PD community, especially those of us who deal with the disease on a daily basis. We are soldiers in the battle for our lives. I want to encourage all of you to get involved in the many great things happening within the PD community today. For those of us who are involved, don’t give up. Continue to work and pray and encourage others through our chat rooms, forums and websites. Keep walking and talking, advocating and educating. Be proactive, always looking for new ways to help reach out to those in need. Continue to work with national organizations, letting them hear our voices and our needs. Offer up your ideas and suggestions of how WE TOGETHER can make a difference. Where before there was only frustration, competition and neglect, may there now be harmony, unity and help. Let your opinions be heard in our communities, board rooms and in our houses. Parkinson Disease is not a secret.

It is time that WE as ONE UNIFIED FAMILY lean on each other without bias or prejudice, putting aside our egos and our agendas. I declare that NOW is the time that we forget about our differences and focus on the needs of those living with PD. Let us be BRIDGE BUILDERS and PEACEMAKERS in what appears to be a hostile environment in which the only goal is the race to be the best or the most and the needs of the people with PD go unmet. Therefore, on this day, I personally commit myself and all the resources of Movers & Shakers with likeminded commitment from our board to the war on Parkinson’s Disease without regard for personal satisfaction or public recognition and I challenge ALL organizations in direct contact or in support of those with this disease to UNITE and work together to accomplish what has eluded us to this day, ONE TEAM, ONE GOAL, ONE CURE!

Michael J. Church
Exec. Dir.
Movers & Shakers
http://www.pdadvocates.org/

Re: Unity in the PD Community
Name: Michael J. Church
Date Posted: Apr 27, 05 - 9:28 AM
IP Address: 64.12.117.8
Email: mjc0827@aol.com
Website: http://www.pdadvocates.org
Message: Good Morning Movers & Shakers!

I am sooo excited this morning, I can't stand it. Would it be too weird to say, "Now is a great time to have Parkinson's?" Maybe, but that is how I feel. 10 years ago, if you asked me how I felt, I would have told you to get lost, leave me alone. But now, instead of feeling like Eyor and acting sorry for myself, I decided to get mad. That's right, mad! Mad at life, at God, Parkinson's Disease, the medical community, you name it, I was mad at it. The biggest source of my anger extended from my lack of knowledge about PD and support for young people with this disease. I wanted so badly to connect with others like me that dealt with PD. So in my desperation and frustration, this group was founded.

This AOL group began with the hope that others would come and share their experiences, their hopes, their frustrations and together we could seek out ways and methods of dealing with PD. Now, its 3 years later, and this group has undergone many changes, both in people and structure. The purpose is still pretty much the same, but the scope and reach of that purpose has broadened just a bit. People with all kinds of different experiences, stories and testimonials about their life with PD have shared here. Some have gone on to start other support groups that have reached even more young people with PD and I applaud that.

Enter Movers & Shakers...In April 2002, Incorporation papers were filed in the state of Florida effectively creating Movers & Shakers, INC. This organization sought to reach the young people of this nation who are told halfway through life, you have a Progressive Neurological Condition called Young Onset Parkinson's. WHAMO! Now what? Well...what do I do now? You wait and not much else, because the system of support for people like us is ill equipped to do anything to help in spite of raising millions of dollars and relying upon celebrity status to call attention to themselves. If I sound a bit critical, I AM! And so should you. The young onset Parkinsonian (us), is far too often overlooked whenever the PD community (science, medical, education, support...), discusses how to improve treatment or where to spend support dollars...research for a cure vs. quality of life issues. The problem isn't lack of money, research or information. No, no, and no. The problem in the pd community is lack of unity...that's Unity spelled, U-N-I-T-Y.

That is the main goal of Movers & Shakers. "To foster a spirit of unity within the parkinson's community, working together with all organizations and groups for the purpose of improving the quality of life for those with Parkinson's Disease and to close the gap in a search for a cure."

Therefore, I challenge all of you, with or without this disease, to "get mad," become active in your town, church, local businesses and spread the word, from Priest River, Idaho all the way to Spring City, Tn., from Key West to Chicago. Write your local newspapers, t.v. stations, talk about it in your schools, lodges and civic organizations. Write your elected officials, tell them to support "PD friendly" legislation. Ask me how? Great things are happening...but the parkinson's community is like a big ocean liner, it takes a whole lot of time and effort to get a big ship like this one to change direction. But things are changing and for those of you committed to "Spring Fling" in May, wonderful things await.

Gretchen and I (mostly Gretchen..lol) have been hard at work, preparing to give you the latest and most up-to-date info., along with your ideas and suggestions, backed up with powerful speakers from the PD community. Real Movers & Shakers, who will motivate and equip you with the tools necessary to reach others in your neck of the woods who like some of us, have PD and no support. I apologize for the length of this email, but I just can't contain my enthusiasm for what is happening here in Naples, FL. It is infectious, the support and generosity of people wanting to make a difference and all of you as members of this group and this organization are part of that effort. So, I would say, don't miss this event in May. It is a small investment in time and education that will pay dividends in Unifying the Parkinson's Community as a whole. "Together We Win! See you in May!

Michael J. Church
Executive Director
Movers & Shakers, Inc. 15275 Collier Blvd. #201 Box 151 Naples, FL 34119
(239) 304-2241

Thursday evening I had the distinct pleasure of participating in an online meet and greet hosted by Southeast Parkinson's Assn. (SEPDA). This organization, based in Orlando, FL is a dynamic and well structured group of committed people determined to make a difference in the Parkinson's community.

President, Steve Hochberger and Forum Host, Dana Baker were very gracious and informative hosts. Although, I had to leave due to an emergency, I heard from some of our members that participated as well, that it was refreshing to meet and chat with other young people with Parkinson's too. It truly warms my heart to hear such cooperation and professionalism demonstrated by two organizations both with similar goals that share a mutual respect for one another and have the proper focus where it should be, on the people with Parkinson's. I thank Steve and Dana for a successful event.

Unfortunately, this can't be said about all PD organizations. In my travels across the web, I've discovered an atmosphere of hatred, animosity and arrogance within the YOPD community. It disturbs me and I take no pleasure in saying it, nonetheless, its true. Some YOPD groups are embroiled in name calling and petty arguments instead of prioritizing the real needs of people living everyday with this disease. How easy it seems, to forget the pain and loneliness of dealing with Parkinson’s, eclipsed now only by the self-centered pursuit of prestige and recognition. Let me just say that such zealous egocentric behavior will only result in further division and hostility among young people with PD. It is such a shame that a large collective group of talent is bent on tearing one another down instead of brainstorming new and innovative ideas to make the young onset community better.
Boy, do we have work to do!

Its stated rather eloquently, “you shall reap what you sow.” In other words, if you also engage or encourage bitterness and an adversarial attitude toward other people or other organizations, the same will follow. Let us be the peacemakers, the “Bridge Builders” if you will, and demonstrate a positive spirit of cooperation and unity. Despite the criticism and pessimistic view of some, we shall continue to march under the banner of unity. Then and only then, will people in the PD community see, that cooperation and teamwork is possible. It is been my experience, this type of organizational philosophy is far more effective than one of competition. That concept is one for Wall Street or corporate America, not for the townships and villages of Main St. USA. I apologize for belaboring this point and for even bringing it up, however, what my eyes have seen disturbs me greatly Therefore, as I and others have continued to state, as directed by our board and defined in our mission and goals, this organization (Movers & Shakers, Inc.) will not engage or involve itself in any
divisive or harmful chatter or rumors either verbal or written, regardless of the source. Instead, as Executive Director of this organization, I will continue to lead and personally demonstrate positive examples of ethical behavior and exceptional business standards that meet or exceed those best practices that measure the activities of business and organizational efficacy.

I rise on this occasion asking for the support of our members, board and staff, that the negative and ugly behavior of a few within the community, don't find a place in the Movers & Shakers Family. Those of you who know me well, can testify to my character and purpose. I do not seek recognition, accolades or awards, my mission is simply to reach out to the young onset community, to make a positive difference in the quality of life and in the process unite an adversarial and somewhat divisive group.

So, I lay the challenge at the feet of all of you. Who will join me in this quest?

" I am but a mere servant of the people, given authority and power by God, defined on earth by Jesus Christ and made complete through simple obedience to His word."


Michael J. Church
Executive Director

PS: If you haven't already, I encourage you to visit or drop Steve or Dana a line and find out more about their organization (SEPDA). They can be reached at Steve, srh_ppp@sepda.org or Dana, Dgator383@aol.com or visit their website at www.SEPDA.ORG

As I lay in a hospital bed for a week I had a lot of time to reflect on my life, PD, Movers & Shakers, well, everything.
I don't do well in hospitals, especially at night, the lonliness, being seperated from my family, and the general feeling of being in a glass room with people coming in every 4 hours to take something from me or add something to me was getting unnerving.
But something was different this time, for every strange noise from some machine or stranger entering my room, came a phone call from one of you, or a visit, or Michael bringing me an email or fax. Everything faded, as I heard a familiar voice or saw a face of someone who cared. It made me so grateful for this group, and it made me realize WHY we are here. This is what we are all about.
So I wanted to say THANK YOU for making a difference in my life, for taking the time to touch my life. The next time you feel you are not doing anything to make a difference. Remember even the smallest act of kindness or support can have the largest ripple effect. I KNOW! I did on me!

Gretchen Garie
President
Movers & Shakers

To All My PD Friends & Family



Just as I am sure as the sun rises and I begin another day with PD many of you like me will reflect on post PAN and also WPC thoughts. It has been a long 10 days many of those spent shaking and freezing, and I'm not talking about the Wash. D.C. weather, although it was a balmy 28 degrees with 45 mph winds and occasional snow flurries.



Much of what happened in DC unfortunately I cannot speak of. I am sworn to secrecy and subject to a sacred PD code never to be breached. Therefore, for those of you who were unable to attend, the only way to learn of what happens at these events is to attend. Of course there are the rumors, but they will remain just that. You see, it is said, "What happens in DC, stays in DC!" I can say this though, good times were had by all.



The stuff I can speak on are the following.



First, the PAN forum consisted of about 300 attendees, of which there were 160 advocates from approx. 40+ states. Those figures alone should tell you about the need for additional advocates. Your help is definitely needed in order to affect changes in federal legislation that have an impact both directly and indirectly on Parkinson's disease.



Issues discussed in the Feb. 19-21, 2006 Session included those on:

the latest scientific research
proposed legislative initiatives for both house and senate
ways in which you (the pd patient) can make a difference in new treatments and cure based research
an open discussion regarding stem cell research
the role grassroots orgs play in advocacy
and much more
I discovered that regardless of what phase or stage of PD we are facing, that the need for advocacy continues to be paramount in our struggle and fight for a cure. I came away with a renewed sense of hope and commitment to do whatever it takes to educate and make aware those people who have the power to assist our cause and to boldly ask for them to do so. I know from talking to many with whom I met and renewed old acquaintances that they feel the same as I.



Secondly, as we moved on to the WPC (world Parkinson's congress), it was revealed to me and others that PD stretches way beyond the borders of the US. We met PwPD, scientists, doctors & doctors with PD, representatives of pharmaceutical companies, medical equipment co.'s and hundreds of others. Although the event lasted a week, it was said by many that even two weeks wasn't enough to take it all in. There were exhibitors (including our own Movers & Shakers booth), posters, workshops of every kind, open discussions, seminars, interactive displays, formal speeches from Michael J. Fox and some of the most leading scientists and medical professionals from around the world. There was so much information, one could hardly take it all in. I personally met people from around the globe (including a young woman from S. Africa) who had PD. It was quite the event and full of opportunities for networking, coordinating, partnering and sharing. The end result indicates a tremendous need for organizations and groups to come together and work toward a common theme, "hope for a cure and support for the weary."



2009 - Paris, France is the setting for the next WPC. It is sure to contain just as much activity and information as this event. I would encourage anyone who has a connection to PD to attend. You can bet, just as the sun will rise again, I will be there (along with my French dictionary) to advocate for those living with PD whenever and where ever the need may be.



These are just my initial thoughts and observations in what has surely been an exciting past 10 days. More details will follow and any questions answered, unless of course they call for me to breach that vow of secrecy that I am sworn to keep. If you really need to know what happens at these events, then make your plans now for next years annual PAN forum and the 2009 WPC.



For more information you can go to the Parkinson's Action Network's web site at: www.parkinsonsaction.org and click on the web cast to view this year's forum or go to:

www.pdadvocates.org and click on the PAN forum webcast link. Also, look for additional emails, newsletters and web postings from Movers & Shakers "international"?

We are looking for some volunteers to host a chat in any of our 3 rooms. Yahoo, MSN or AOL. We would like to start with evening first, as most people are on at that time, but we will welcome any hosts at any time.

Please let me know if you are interested.

Gretchen Garie
President Movers & Shakers
indigoskky@aol.com

Researchers Create Stem Cells Without Destroying Embryos

By GAUTAM NAIK
November 20, 2007 8:55 a.m.


In the quest to treat difficult diseases, researchers have created human embryonic stem cells without destroying embryos or using hard-to-get eggs. The technique may prove to be easier, cheaper, and more ethically appealing than an alternative approach that requires cloning.

Two separate teams of researchers say they have sidestepped the cloning method and reprogrammed mature human cells into a primordial, embryonic-like state. Those cells were then transformed into other tissue types, such as heart cells. The long-term hope is that such freshly-created tissue may, for example, be used to heal a heart-attack patient.

Unlike cloning, "the wonderful thing about this approach is that it's easy. You're going to see lots and lots of labs give it a try," predicts Robert Blelloch, a stem cell biologist at the University of California, San Francisco, who has performed his own reprogramming experiments. He says he read the latest studies but wasn't involved in them.

One set of experiments, published today in the journal Cell, was led by Shinya Yamanaka of Kyoto University. A second paper was published in Science by researchers at the lab of James Thomson of the University of Wisconsin, who created the first human stem-cell line in 1998.

The Science and Cell papers were embargoed for general release until noon, New York time, but an Australian paper broke the embargo.

In both experiments, the scientists inserted several genes into a mature human cell. For reasons that no one can yet fully explain, this essentially reset the molecular clock and turned older, mature cells into embryonic-like cells.

There are several limitations to the current approach. For now, both teams had to use dangerous viruses to effectively transport the genes into the cell, which could have deadly consequences if it was immediately applied to humans. Dr. Yamanaka and others say they are testing other viruses in the hopes of finding a non-harmful one.

And before the reprogramming technique can be applied to human patients, it needs to be tested on large animal models to ensure that it's safe and effective.

Still, the latest results are a big step up from similar breakthroughs in mice, separately reported this summer by Dr. Yamanaka's group and two other research teams in the U.S. The Kyoto team reported that embryonic-like cells developed with the new technique could even help form a new mouse -- a gold-standard test for the viability of the created tissue.

Almost nobody predicted that the same feat could be repeated with human cells quite so quickly.

"We were very surprised because human and mouse embryonic cells are very different," says Dr. Yamanaka, who is also a senior investigator at the Gladstone Institute of Cardiovascular Disease in San Francisco, and is rapidly emerging as the leading scientist in his field. Much of the reprogramming experiments published this summer was sparked by a landmark paper he published in 2006.

Many scientists have believed that stem cells' grand promise would more likely be fulfilled if they created an embryonic clone of a patient, and then harvested that clone for fresh tissue. Heart, nerve or other cells obtained that way would have a singular advantage: They wouldn't trigger an immune response from patient because they'd share the same DNA.

There aren't any sizable ethical concerns or immune-response worries with reprogramming. But to many, the science seems daunting, even implausible.

"You have this extremely strong arrow of time -- and it's is going completely backwards," says Dr. Thomson. His team, including researcher Junying Yu, also used four genes to reprogram the human cell. Two of the genes they used were different from the ones tested by their counterparts in Japan.

Despite the latest breakthroughs, the nuclear transfer approach - which uses a cloning step to get embryonic stem cells - isn't likely to disappear. Just last week, for example, researchers in Oregon created embryonic clones of monkeys, suggesting that the nuclear-transfer method still hold considerable promise.

However, nuclear-transfer is being held back by several problems. It's hard to get human eggs; the technology is expensive and tricky; and funding isn't so readily available. A major scandal has hurt, too. In 2005, a Korean researcher published a study that appeared to show that he had created human-embryonic clones, but the claim turned out to be fraudulent.

So it's not such a surprise that Ian Wilmut, the man who cloned Dolly the sheep a decade ago, recently said he has been persuaded to give up his own cloning experiments, thanks to news of Dr. Yamanaka's successes.

"Any scientist with basic technology in molecular and cell biology can do reprogramming," says Dr. Yamanaka. "If we can overcome the issue [of having to use dangerous viruses to ferry the genes into cell

UCB Advises US-Physicians to Down-Titrate Patients on Neupro In View of Out-of-Stock Situation
PharmaLive.com - BRUSSELS, Belgium - March 20, 2008 at 7:00 am CET - UCB announced today that the company will be recalling Neupro® (rotigotine transdermal system) in the United States and certain batches in Europe. The recall decision resulted from ongoing monitoring of marketed product, which revealed a deviation from the approved product specification. As a result, there will be an out-of-stock situation with Neupro® in the United States in late April 2008. In the European Union and most other regions Neupro® supply is sufficient.

"We have informed the FDA and agreed to actions to inform healthcare providers and patients," said Iris Loew-Friedrich, MD, PhD, Chief Medical Officer, UCB. "We advise patients in the US to contact their healthcare provider to begin the down-titration of Neupro® as per the guidelines in the label. It is strongly advised that patients do not discontinue therapy abruptly. I also want to emphasize that the issue is not one of product contamination or toxicity but rather one of possibly reduced clinical performance of some patches."

Down-titration (reduction of the dose) should be gradual and performed under medical supervision. Rapid reduction of therapy for Parkinson's disease has been associated with a symptom complex resembling neuroleptic malignant syndrome or akinetic crises.