Hope. The only Antidote

PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION
FOR RESEARCH AND ADVOCACY   
501 C 3  - ID # 550795076

The CFIDS Association of America, Inc.
Mrs. Kimberly McCleary
President & CEO
P.O. Box 220398
Charlotte , N.C 28222-0398

Re: BALANCE Magazine – Oct 23, 2004 Conference, Fort Lauderdale, Florida

Dear Kim:

I would like to express my profound and sincere gratitude to you and to the CFIDS Association of America, Inc, for providing P.A.N.D.O.R.A., Inc – Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy,  a display table at the Oct 23, 2004 Balance Magazine conference. The all day event was held in Fort Lauderdale and had 350+ in attendance. The purchase of the display table included a business card ad in their program book, along with one line advertisement of your name and our name as well.

We knew the conference was a very good avenue for us to primarily raise awareness in our local community. However because of the national caliber of speakers and exhibitors we also reached above and beyond our own expectations and beyond South Florida .  

At the conference we distributed the CFIDS Association brochures and P.A.N.D.O.R.A.’s brochures. Susan Clifton, a P.A.N.D.O.R.A board member, and I took turns manning the table. We raffled a desk calendar – “For Women Who Do Too Much” filled with daily inspirations. The winner of the calendar was Deborah E. Grayson, M.S., L.M.H.C.- Clinical Psychotherapist, and A.A.S.E.C.T Certified Sex Therapist. Ms. Grayson is a sexual therapist with a long experience in helping people deal with issues of intimacy and sexual health. We now have someone who is willing to speak to our empowerment groups to discuss wellness approaches to sexual healing for folks with neuroendocrineimmune disorders. I no longer will be the lone voice addressing these issues in our local meetings.

Participants during the conference stopped by our table and although they may have heard of the name CFS, they really did not have a good grasp and understanding of the profound impact CFS and per that matter Fibromyalgia as well, do to persons diagnosed with these illnesses. Unless someone has a family member suffering from CFS, the illness is very much unknown to the general public. Lack of knowledge about neuroendocrineimmune Disorders remains strong in mainstream America .

P.A.N.D.O.R.A. was the only true 501(c)(3) charitable organization displaying at the conference. There were private, state hospitals and state universities but they function in a different manner. This is without a doubt a good way to raise awareness to our cause. We need to take our plight to mainstream America.

I was able to prospect potential donors and financial pledges were made at the  conference. Partnerships with other business entities will be established in many forms. Nova Southeastern University feels it is important to help us educate the community about CFS. Link exchange of web sites was finalized with two other exhibitors and one presenter.

I was able to prospect a potential facilitator for an empowerment group (support group) for the Palm Beach County area, which at the moment lacks a fully organized group.  Former business colleagues of mine were there and it was almost like old times as we caught up on what we were up to since I became ill with CFS and FMS. 

I also take this opportunity to say that the International Coalition Session professionally moderated by Rebecca Artman, P.A.N.D.O.R.A.’s Chair for our Legislative Affairs & Advocacy Committee was the catalyst for the partnership/sharing of resources with you. 

P.A.N.D.O.R.A.’s theme shared with the host – The Wisconsin CFS Association, of the AACFS Conference weeks ago, was called “Communities In Action” resulting in “Unity in Action”.  Our collaborative theme included reconciliation, professionalism, respect and diversity. "One strong voice" anchored and strengthened by all the interested organizations regardless of their size. There is room for everyone. We welcome every organization in our “community of suffering” to work with us in a collaborative manner. The end result will be every organization working together towards the goal of transforming our national and international community into a community of healing.

Rebecca and I sincerely hope we were able to plant the seed for future cooperation. We sincerely hope our efforts will go beyond "peaceful co-existence" and "understanding". We are sincerely striving for long term relationships build in trust, confidence and life long friendships. We hope the national/international coalition will be a healthy depository for sharing of resources, great advocacy ideas and smooth implementation.  

When I founded P.A.N.D.O.R.A., the goal was to create an organization based in simple but important principles;

To be one strong voice for many . . .

• Raising awareness
• Providing support and educational resources
• Establishing partnerships
• Supporting research
• Encouraging creation of empowerment groups
• Organizing conferences

As you can see in our mission, we will always look forward to these types of collaboration. On behalf of P.A.N.D.O.R.A. and on behalf of our distinguished board of directors, I once again thank you for your continuous support. Present and future collaboration as such, lightens the load, strengthens our voice and encourages us all to keep the faith with a hopeful eye towards a brighter future.  

In Good Health and In Beauty,

Marly (Marla) C. McKibben
Founder