 |
 |
I have been asked to Post this by Mike Claeys, Parkinson's Action network= =0A=0A-------------------------------------------------------------------= =0A=0A=0ANew Initiative for the New Year=0A=0A=0A=0A After ending 199= 7 with the historic passage of the Morris K. Udall=0A=0AParkinson=92s Res= earch Act, the Parkinson=92s community enters 1998 with new=0A=0Alegislat= ive priorities. For those who haven=92t yet done so, the first=0A=0Atask= is to inform your Representatives and Senators of the Udall Act=92s=0A= =0Aenactment as part of the fiscal year 1998 Labor/HHS Appropriations bil= l,=0A=0Aand to thank all those who cosponsored the bill and voted for its= =0A=0Apassage.=0A=0A=0A=0A Top priority for this year is to secure ap= propriations to fully=0A=0Afund the Udall Act. Reaching this goal will m= ean a renewed focus on=0A=0Astrengthening the national advocacy network a= nd improving relations with=0A=0ACongress. This Action Advisory introduc= es a new initiative, the=0A=0ACommunity Action Team (CAT) program, design= ed to help achieve these=0A=0Agoals. We ask that you review this proposa= l and respond with your=0A=0Ainterest and input.=0A=0A=0A=0ANew Challenge= s=0A=0A The Parkinson=92s community begins 1998 with obvious advantag= es over=0A=0Aprevious years, and with new challenges. As a free-standin= g bill, the=0A=0AUdall Act was an effective rallying point for the commun= ity and provided=0A=0Aadvocates with incremental goals and accomplishment= s (like signing up=0A=0Acosponsors) on the way to passage. Without the o= rganizing and=0A=0Amotivating influence of a Parkinson=92s-specific bill,= it is necessary to=0A=0Aadapt the successful advocacy techniques of 1997= to the new legislative=0A=0Arealities of 1998=97specifically, the comple= x process of securing=0A=0Aappropriations. Succeeding in this legislativ= e environment will require=0A=0AParkinson=92s advocates to focus their ef= forts on improving two general=0A=0Aareas: community organization and com= munication with Congress.=0A=0A=0A=0A To ensure full funding of the U= dall Act, greater emphasis will be=0A=0Aput on contact with the House and= Senate Appropriations Committees, in=0A=0Aparticular the Labor/HHS Subco= mmittees. This requires establishing and=0A=0Aorganizing effective advoc= acy campaigns in the states and districts of=0A=0Aeach member of these im= portant committees, building strong relationships=0A=0Awith those members= and their staffs, and communicating to them the needs=0A=0Aand prioritie= s of the Parkinson=92s community.=0A=0A=0A=0AThe Community Action Team Pr= ogram=0A=0A To meet these goals, we propose establishment of Communit= y Action=0A=0ATeams (CATs)=97independent cells of advocates participating= in a=0A=0Acoordinated advocacy campaign to provide greater organization = within the=0A=0AParkinson=92s community, raise public awareness of Parkin= son=92s and to=0A=0Acommunicate more effectively with all levels of gover= nment.=0A=0A=0A=0A CATs are not another Parkinson=92s organizational = entity, or another=0A=0Alevel of bureaucracy. Rather, the CAT network is= a practical system for=0A=0Abuilding on the community=92s strengths and = successes, and organizing=0A=0Aaround commonly accepted goals. The inten= t is to take advantage of the=0A=0Aexperience and organization which alre= ady exists within the community,=0A=0Aexpand it, and focus its efforts in= productive ways.=0A=0A=0A=0A CATs will not be designated by size, af= filiation with any=0A=0Aestablished national, regional or local group, pa= yment of dues or=0A=0Aadherence to any bylaws. Designation will be based= on two simple=0A=0Acriteria:=0A=0A1) willingness to pursue the communit= y goals of greater organization=0A=0Aand more effective=0A=0A commu= nication with government; and=0A=0A2) familiarity with and use of common= advocacy materials and=0A=0Atechniques.=0A=0A=0A=0A Each CAT will ha= ve a recognized leader, or be lead by committee.=0A=0AFor purposes of bui= lding an efficient communication network, each CAT=0A=0Awill designate on= e contact person. Ideally, each contact person will=0A=0Ahave a telephon= e answering machine (or voice mail), access to a fax=0A=0Amachine, and th= e ability to receive, send and print email=0A=0Acommunications. However,= such technical proficiency is not as important=0A=0Aas establishing a co= mpetent and reliable means of exchanging=0A=0Ainformation.=0A=0A=0A=0A = Efficient communications also require CATs to be organized into a=0A=0A= hierarchical structure for regions, states, Congressional districts and= =0A=0Aother areas where groups may overlap. This structure will undoubte= dly=0A=0Abecome apparent as the CAT program progresses, and will adapt to= =0A=0Aaccommodate additional CATs.=0A=0A=0A=0A It is expected that th= e CAT network will closely parallel the=0A=0Acurrent infrastructure of Pa= rkinson=92s support groups and established=0A=0Alocal activists. CATs ar= e also intended to appeal to active individuals=0A=0Anot involved with tr= aditional support group activities.=0A=0A=0A=0AMaterials=0A=0A An imp= ortant part of the CAT program will be the distribution and=0A=0Ause of a= common set of fundamental advocacy materials. These materials=0A=0Awill= help ensure a well informed and uniformly equipped advocacy=0A=0Acommuni= ty, and will in turn help establish a clearer, more effective=0A=0Adialog= ue within the CAT network as well as with Congress. Each CAT will=0A=0Ab= e provided with a foundation of advocacy and informational materials,=0A= =0Aincluding:=0A=0A=0A=0A- Community Action Team list, contact persons an= d essential information=0A=0A- Congressional Handbook=0A=0A- Sample Lette= r to Congress=0A=0A- Sample Letter to Editor=0A=0A- Sample Letter From Sc= ientist/Researcher to Member of Congress=0A=0A- Sample Letter From Member= of Congress to NIH or NINDS=0A=0A- Copy of Udall Act of 1997 and all rel= evant accompanying report language=0A=0A- Detailed review of passage of U= dall Act, report language, increases in=0A=0ANIH and NINDS budgets, and e= xplanation of how they relate to each other=0A=0Aand what it means=0A=0A-= A To-Do List, or Check List of basic information each CAT will need to=0A= =0Aknow, and advocacy goals each should pursue=0A=0A Other advocacy a= nd informational materials will also be available,=0A=0Aand new materials= generated as necessary. We hope for your input and=0A=0Asuggestions reg= arding materials.=0A=0A=0A=0AWhere to Start=0A=0A1. Anyone interested in= creating a CAT or having their current group=0A=0Adesignated a CAT shoul= d contact Michael Claeys at (800) 850-4726.=0A=0A2. Work within your loc= al Parkinson=92s community to find people wishing=0A=0Ato become active a= nd participate in the CAT.=0A=0A3. Designate a CAT leader and/or contact= person (may be the same=0A=0Aindividual).=0A=0A4. Contact your Represen= tative and two Senators. If appropriate, thank=0A=0Athem for supporting = the Udall bill in 1997 (PAN can provide information=0A=0Aon your legislat= ors). Provide them with information on Parkinson=92s=0A=0Adisease, your = group=92s interest, and the community=92s legislative=0A=0Apriorities for= 1998. (The CAT materials will contain this information.)=0A=0A=0A=0A = The highest priority areas for establishing CATs are in the states=0A= =0Aand districts of the members of the Senate and House Labor/HHS=0A=0AAp= propriations Subcommittees (see box this page). Other priorities are=0A= =0Athe states and districts of the members of the full Appropriations=0A= =0ACommittees, the House and Senate Authorizing Committees, the=0A=0ACong= ressional Leadership, and any Member with a particular interest in=0A=0AP= arkinson=92s or medical research. While these are the top priorities,=0A= =0Aremember that every Member of Congress is important and should be=0A= =0Aencouraged to become a Parkinson=92s champion.=0A=0A=0A=0ACAT Leaders= =0A=0A Given the greater degree of organization and communication sou= ght=0A=0Aby the CAT program, CAT leaders will require a solid understandi= ng of=0A=0Athe program, the advocacy materials and techniques used, and t= he federal=0A=0Alegislative process. Leaders are encouraged to thoroughl= y review the=0A=0Amaterials provided, and to contact Michael Claeys with = any questions.=0A=0A=0A=0A In addition to the basic advocacy training= provided, PAN=92s June=0A=0A1998 Public Policy Forum will include specia= l advanced training sessions=0A=0Afor CAT leaders. During the Forum, CAT= leaders will also be asked to=0A=0Aplay a greater role training less exp= erienced advocates.=0A=0A=0A=0AFeedback=0A=0A As with any community-b= ased effort, the CAT program will only be as=0A=0Asuccessful as the peopl= e who participate in it. The Network would=0A=0Aappreciate your feedback= on the Community Action Team initiative, and=0A=0Ayour suggestions for h= ow to make it as effective as possible. Please=0A=0Asend your comments t= o the attention of Michael Claeys, Parkinson=92s=0A=0AAction Network, 818= College Avenue, Suite C, Santa Rosa, CA, 95404.=0A=0ATelephone: (800)850= -4726 Fax: (707)544-2363 Email: [log in to unmask] ----- Headers --------------------------------=0A=0AFrom: "Parkinson's Ac= tion Network" <[log in to unmask]>=0AReply-To: [log in to unmask]: P= arkinson's Action Network=0A