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