THIS SECTION OF THE FORUM IS SET ASIDE FOR POSTS, MESSAGES AND NEWS ABOUT PARKINSON'S DISEASE ADVOCACY. IT CONTAINS INFORMATION ABOUT LEGISLATIVE ISSUES, PENDING BILLS, EXPECTED VOTES AND COMMITTEE HEARINGS RELATED TO PARKINSON'S DISEASE. ALL YOUR ADVOCACY POSTS ARE WELCOME BOTH FEDERALLY AND IN YOUR STATE. PLEASE MAINTAIN THIS SECTION FOR "ADVOCACY POSTINGS ONLY." ANY ERRANT POSTS MAY BE MOVED OR DELETED IN ORDER TO MAINTAIN ORDER AND EFFICIENCY. THANKS FOR YOUR COOPERATION AND PARTICIAPTION.

FORUM HOST

NY Vote on stem cell research

from: Rochester Democrat and Chronicle
June 16, 2005

What's at stake
The University of Rochester says it could stand to lose $42million yearly
in research grants if its stem cell researchers are lured to other
states. The Rump Group supports UR's position.

New York must invest in stem cells, execs say
UR claims annual million-dollar losses if its researchers are poached by
other states

Lauren Stanforth
Staff writer

(June 16, 2005) — A group of Rochester's top business executives has
urged state legislators to support embryonic stem cell research for what
it says is the good of New York's economy.

Members of the Rump Group, a collection of 20 Rochester executives who
seek to influence public policy, sent a letter June 9 to Gov. George
Pataki and nine state legislators from the Rochester area, asking them to
support a bill that would establish a two-year, $300million stem cell
research fund.

President Bush imposed a ban on federal funding for most embryonic
research in 2001. But because of scientists' hopes that such research
could lead to cures for Alzheimer's disease, muscular dystrophy and
diabetes, some states want to fund the research themselves.

California is already providing $3 billion for stem cell research over 10
years.

Research institutions such as the University of Rochester fear that these
states will steal their top scientists — taking with them millions of
dollars in research grants and patent potential.

C. McCollister "Mac" Evarts, CEO of the UR Medical Center and a Rump
Group member, gave the same presentation to the Rump Group that UR is
giving to some state legislators, said Rump chairman John "Dutch"
Summers, CEO of Jasco Tools Inc.

The use of adult stem cells, the building block cells of organs and
tissues, is already federally funded. But scientists say embryonic cells
replicate at much faster rates.

"I think this is one of the big issues," Summers said about embryonic
research. "But do I think something will happen absolutely immediately?
I'm not sure."

Fourteen of 20 group members signed the letter. Summers said that
sometimes members aren't in town to sign or they might abstain for
personal or professional reasons.

Those lobbying in support of embryonic stem cell research have focused
much effort on Republican members of the state Senate. It's assumed that
the bill will pass in the Assembly, since it was put forth by the
speaker, Assemblyman Sheldon Silver, D-Manhattan.

State Sens. Michael Nozzolio, R-Fayette, Seneca County; James Alesi,
R-Perinton; and George Maziarz, R-North Tonawanda, Niagara County, all
received the letter. They could not be reached for comment.

State Sen. Joseph Robach, R-Greece, has already expressed his support for
stem cell research.

State Assemblyman David Gantt, D-Rochester, was one of five Assembly
members who also received the letter. But Gantt had already sent a letter
to Silver on May 17 to offer his support.

"We're at risk of losing some of the top researchers at the University of
Rochester to other medical colleges," said Lovely Warren, Gantt's deputy
counsel. "We need to keep those people in the Rochester area."

LSTANFOR@DemocratandChronicle.com
Email: Klepacki8@aol.com

Advocacy Needs Action Part One
Name: Michael J. Church
Date Posted: May 25, 05 - 3:07 AM
IP Address: 152.163.101.8
Email: mjc0827@aol.com
Website: http://www.pdadvocates.org
Message: I just have to tell you all it is so exciting to see this group so alive. Last night was a perfect example. There we all were discussing ways in which we (those with PD) could get an otherwise unsympathetic and unknowing public aware of our situation. That is not to say that everyone is ignorant about PD, but sadly it is a large percentage of the public. That's because it isn't a priority to them, it doesn't affect them. As Frank said, "There is no sense of urgency." So, how do we create that sense of urgency, to make YOPD a priority, to bring it front and center? ADVOCACY!

What is advocacy? Advocacy is when enough people get fired up about a specific issue and do something about it. There are many forms of advocacy. Legislative, Medical, Civil, Personal, Environmental. Call it what you will, advocacy, activism or just plain old frustration from lack of concern for the people involved. "The squeaky wheel gets the grease." There are many YOPD orgs. that are out there making noise, and I commend them, but it isn't enough.

As all of you were chatting and throwing around ideas, I was taking notes. First let me congratulate you all for your input. Every one of you had some great ideas. I've heard it said that, "The cure lies within the cause." I don't know if that's true medically but philosophically there is a lot of truth to it. The cure will come if we can get people to focus on our cause. Here are some of the notes that I took.

..change the mindset or attitude of people (inclusive of medical community)
..legislative advocacy through Parkinson Action Network (an organized and established advocacy org.)
..a bumper sticker with a slogan developed by kids with an 800 number
..get the support and backing of natl PD orgs.
..run ads in local newspapers with slogan and an 800 number
..a PSA featuring young onset so that people can see that Parkinson's is not just a shaking old man's disease.

Correct me if I've left anything out. We (us movers & Shakers), who attended Spring Fling, took part in a brainstorming session in which we came up with ideas for our Neurologists to better understand, who we are, what we don't want and what we do expect from our Neuro. We then planned to draft a letter to the Natl. Neuro. Assn. and ask other YOPD orgs to sign on. This is part of a campaign to change the way the medical community thinks about us and PD (specifically, Young Onset). I am happy to say that as of this morning, we have three other YOPD orgs that have agreed to support this effort. Let's go forward with this...take the next step. Talk to your local associations, talk to the natl. organizations, talk to everyone. Perhaps a petition would have an impact. I am aware that a similar letter was recently sent to the natl. PD orgs (NPF, PDF, APDA...) by the Exec. Dir.'s of several grassroots YOPD orgs calling for a similar change in attitude or mindset and for recognition of our efforts and needs. The jury is still out on that one.

I don't want to discourage anyone from participating or steal anyone's thunder. To the contrary, if you have ideas or suggestions, lets hear them. The only bad idea is the one not shared. I agree that this effort is worthwhile, potentially successful and will result in sweeping changes within the PD community including the YOPD, but in order for change to take place, an organized and well planned campaign must be implemented. Even before that, a proposal or basic outline must be developed illustrating how or what methods or strategy to take in order to accomplish our goal(s). My experience in politics has taught me that, for a campaign to be successful, it requires three key elements. Knowledge or details of the issue, information about the players and a thorough understanding of the process. The rest is up to you. It involves the intensity, frequency and method of approach. Its like going into battle. You must be prepared physically, emotionally and mentally.

Sorry about the length of this email, but information is key to overcoming ignorance and inactivity. We seem to have experienced a spark within our organization. A spark that encouraged could grow into an inferno that burns away the weeds or chaffe that represents needless chatter or idle talk about change but never comes. It is the same spark I see in many YOPD groups that are actively engaged in advocacy. We started something in Florida. It has grown into positive discussion that could lead to changing the mindset and ultimately the way the PD community provides treatment to us and other Parkinsonians.

End of Part One

Michael J. Church

Advocacy Needs Action Part 2
Name: Michael J. Church
Date Posted: May 25, 05 - 3:11 AM
IP Address: 152.163.101.8
Email: mjc0827@aol.com
Website: http://www.pdadvocates.org
Message: This is the UNITY that I spoke of at Spring Fling. It is the same unity that is so lacking among the hundreds of support groups, treatment centers and natl. orgs. called the PD community. Now, before anyone starts hammering on me citing, "Unity Walks, YOPD Conferences, etc.," Let me just say, it isn't enough. We have before us an uphill battle. A challenge or set of obstacles that must be overcome before we can go forward. It is called EGO, and it will get in the way of Unity every time. If we find ourselves thinking about how much money can we raise or how many members do we have, our focus is off. It isn't about us. We must as individuals, and as organizations put our ego's aside and focus on the bigger picture, the good of the YOPD, and not just once or twice a year at some national event. I am talking every hour of everyday that we pick up the phone, write a letter or provide support of any kind. Until we as individuals put our own needs aside and reach out to someone else regardless of how it will benefit us or our org., nothing will change. When I find myself thinking like that, I remind myself, it isn't about me. "The cure for an inflated ego is a sharp pin called humility and it is always found in someone else." Therefore, I want to go on record as saying, "I, Michael J. Church, in order to build a bridge called UNITY, lay in place the first plank and encourage others to do likewise." I can't tell you how to do this or even if you should. That is a personal decision. I can tell you this, "if you don't, then who will?" I believe we (ALL YOPD) have been silent long enough. We need to be included at the natl. planning level. Consulted on issues that affect our lives. I would be remiss not to mention that there are a lot of good things happening around the globe to call attention to YOPD (the Unity Walk is one such example, the profile page of NPF's Parkinson's Report is another), and I congratulate those that participate. It isn't enough! We must speak up, speak out and speak loud. There are those of us out there that are hiding our disease, refusing to acknowledge the symptoms for fear of losing their jobs, alienating their friends or family, afraid of the unknown. How long have we been fighting, battling, advocating for more funding, more awareness, more treatment? This very email is evidence of one of many voices crying in the wilderness. Right or wrong, I have a voice and I have PD and I absolutely will not stop until everyone knows about it. I am tired of people saying, "Oh, isn't PD that MJFox thing?"

Again I apologize for the length of this email, but this message isn't getting out there. It needs to be a priority, a sense of URGENCY! Otherwise, we will always be relegated to receive the leftover funding, leftover research and leftover treatment. I don't want to be leftover! I'll leave you with this,

Why isn't there a natl. PSA that addresses Parkinson's Disease or even YOPD? MJFox has a brief bit at the end of his sitcom, "Spin City" but that's it. There is more attention paid to Erectile Dysfunction than to YOPD...why? Where's the priority? Raise you voices, let people know and encourage and teach others how to do the same. UNITY...its the only way. If people see us united and like-minded, we are a force to be reckoned with. That is the underlying message behind "World Parkinson Congress." I encourage every PD group, organization or individual to go. Commit to unity and spread the word.


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