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"It’s like deja vu all over again." It was not without some hesitation that I recently called Ivan Suzman to explain on behalf of the Parkinson’s Action Network that regrettably we could not send copies of his testimony to the 89 members of the House and Senate Appropriations Committees. I knew there was a good chance that select portions of our conversation would wind up on the Listserve, so I chose my words carefully. Unfortunately, the one word I didn’t have a choice about was the one word he chose to post: “no.” Reflective of it’s author, Ivan’s testimony is indeed passionate and compelling. It would be wonderful if every Member of Congress took the time to read it - and if what Senator Snowe’s office indicated is accurate, every Member of Congress will have that chance once the complete record of the September 28th hearing is printed. At this time, however, with the Congressional calendar drawing to a close and so many critical advocacy efforts underway, it is beyond the Network’s staff, time and resource limitations to grant Ivan’s request. And this is not an inconsequential request in terms of the labor and resources involved. Every day the Network makes difficult decisions prioritizing the expenditure of energies and resources to best promote and advance the agenda of the entire Parkinson’s community. Not everyone will agree with every decision. However, based on the Network’s track record, I hope community members will trust that the organization is ultimately focused on achieving the maximum impact on Congress and the appropriations process, resulting in the maximum benefit to the Parkinson’s scientific and patient communities. It has been encouraging to learn of individuals taking it upon themselves to send copies of Ivan’s testimony to their Senators and Representative. Perhaps that’s a solution to this situation. Advocates may also want to follow Ivan’s example by writing your own personal Parkinson’s testimony to educate and motivate your Congressional representatives. Most Members of Congress respond best to appeals from their own constituents. Questions, comments or concerns can be referred to the Network at (800) 850-4726 or by email at [log in to unmask] Sincerely, Michael Claeys Policy Coordinator [log in to unmask] Parkinson's Action Network 840 3rd Street Santa Rosa, CA 95404 (800) 850-4726 - voice (707) 544-2363 - fax"