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Advocacy - Federal Level

I Need A Hero Project©

Grass Roots Campaign

Picture courtesy of Keith Stanley-www.kestan.com

A Congressional Caucus for CFS, FM, GWI and MCS (Neuroendocrineimmune Disorders)

Purpose

I NEED A HERO PROJECT© involves P.A.N.D.O.R.A.’s campaign for the establishment of a Congressional Caucus (or similar political effort) for Neuroendocrineimmune Disorders as well as other grass roots activities and fund raisers within our local, state and nationwide communities.

We will also acknowledge any participation and contribution from businesses, professional individuals, sister organizations, patient advocates and benefactors who will join us in the campaign that will focus in the enhancement of quality of life issues for patients with neuroendocrineimmune disorders and their families in the communities where they live.

How it started

P.A.N.D.O.R.A.'s May 2007 trip to Washington, DC resulted in a great opportunity for the establishment of a Congressional Caucus for CFS-ME, FM, GWS, and MCS (neuroendocrineimmune disorders and related illnesses).  We approached several Florida representatives and asked them to step up to the plate and "become our heroes". We need ONE House Representative from the Democratic party and ONE House Representative from the Republican party - HEROES advocating on our behalf to initiate a congressional caucus that will generate attention on the plight of Neuroendocrineimmune disorders patients across this great nation.

I am often told that politicians and the government do not care about our community. It might well be a correct assumption. But, I guarantee you that they will not become our voice, unless we tell them - over and over - how much we need their help.  I guarantee you that they will not get our attention and will legislate on behalf of our community, unless we UNITE and gather our resources toward a common cause. 

Working on Partnerships

ONE COMMUNITY, ONE VOICE, ONE COMMON CAUSE - is a great statement from Dr. Kenneth Friedman, Secretary and Public Policy Committee Chair for P.A.N.D.O.R.A. Dr. Friedman is an important board member liaison of P.A.N.D.O.R.A. working along with the New Jersey CFS Association and with the Vermont CFIDS Association. Dr. Friedman is also our liaison with local, state and federal government health agencies and professional medical organizations.

Future Partnerships

P.A.N.D.O.R.A. hopes to progressively develop a network with all of the CFS-ME/FM/GWS/MCS organizations -large and small- as well as support groups across the fifty states to rally behind this effort. This is not a project that belongs only to P.A.N.D.O.R.A., it belongs to every other stakeholder organization who supports the neuroendocrineimmune disorders community and their supporters.

We also encourage other state organizations and key advocates to attempt the same through their own states in conjunction with our efforts. We need everyone's effort on this grass roots initiative. One grass roots effort in every part of the country needs and should be tied in with other grass roots efforts for nationwide effectiveness.

Heroes in Our Communities

We will also approach potential heroes in the corporate and business communities. We will try to enlist the participation of local, state and national celebrities. We are already gathering letters of support from our medical advisory board as well as from other physicians, researchers, college students and patient advocates. We will need volunteers of all ages and everyone can participate in these efforts.

Get Involved!

You don't have to be in Florida to be involved. This is a nationwide opportunity to take charge of your future - to ensure we have access to social services as our community ages, to ensure disability systems are in place with professionals who are knowledgeable of our condition, and to ensure we have access to treating physicians who are knowledgeable of medical protocols and latest research on  neuroendocrineimmune disorders. 

Send us an e-mail to contact@pandoranet.info in the subject list I NEED A HERO PROJECT and list your skills of any type - computer, graphics, writing, contacting in the media, corporate sponsorship, personal connection to local, county, state and federal politicians, etc.  We will create teams that will work on specific tasks depending on their ability and desire to participate. 

Start with a generous donation!

P.A.N.D.O.R.A. unfortunately does not have the current answers for a cure for CFS/ME, FM and related illnesses, but we together can fight for the quality of life neuroendocrineimmune disorders patients deserve and we will use our level of influence and social network to get a congressional caucus or a similar political effort. Join us and support us any way you can, by volunteering, by donating your professional services, and by making a financial donation today.

We need a hero, and the hero can be you!

 

WE ACKNOWLEDGE THE FOLLOWING HEROES IN OUR COMMUNITY

Supporting our

Florida

P.A.N.D.O.R.A. Members

We acknowledge Nancy Villard, one of our 2007 Advocates Extraordinaire!© who has engaged her friends Tonya Morrison, Anna Smith and Carol Clark, and together they have raised $95 for our Don't Dump It! Donate it to PANDORA! recycling fund raiser.

Broward County

Florida Bond Mortgage

3696 N. Federal Highway, Suite 200,

Fort Lauderdale, Florida 33308

Phone: 954-566-7485

http://www.flbondmtg.com/

Special Appreciation to Ms. Pat Wilken

Pro-Cleaners & Alterations

914 S. Pompano Parkway

Pompano Beach, Florida 33069

Phone: 954-975-4735

Special Appreciation to Martin

Miami-Dade County

P.A.N.D.O.R.A., Inc. – (Business Office)

255 Alhambra Circle, Suite 715

Coral Gables, Florida 33134

Phone: 305-441-0070

Volunteer Help Line: 954-783-6771

www.pandoranet.info

Palm Beach County

CIGC – Center for Individual and Group Counseling, PA

7301 W. Palmetto Park Rd.

Suite 205A

Boca Raton, FL 33433

561.544.8889 –

Drop off Hours: T, W, Th 10am-5pm

Click here for their press release supporting P.A.N.D.O.R.A

 

California

Pro-Health, Inc.

Founded by Rich Carson, a CFS patient advocate, Pro-Health has been serving CFS and FM patients with their supplement needs since 1988

Visit their web site at www.prohealth.com  For Customer Service call:  1-800-366-6056


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