Join PANDORA in Fall Advocacy
In November, PANDORA will have a representative in Washington D.C. to advocate government officials on behalf of patients with NeuroEndocrineImmune diseases. PANDORA founder, Marly Silverman, will be attending the Nov. 8 & 9 Chronic Fatigue Syndrome Advisory Committee meeting at the Holiday Inn at 550 C. St. SW in Washington D.C. PANDORA, CFS Solutions of West Michigan and Mary Dimmock will represent the Coalition 4 ME/CFS and the recent coalition proposal to have chronic fatigue syndrome returned to the “Nervous System Diseases” category in the ICD-10-CM.
As in May, PANDORA is hosting an Advocates ExtraordinaireTM program for patients and their families to be empowered in influencing government policies for a better quality of life. This time, the Advocates ExtraordinaireTM event will include:
1. Patients and their families visiting congressmen or their staff in Washington D.C. on Nov. 10
2. An online Advocates ExtraordinaireTM training session on Nov. 4 for any patient or family member wanting to participate.
3. Printed material to be given to congressmen with disease information and a letter urging federal funding for centers of excellence and more biomedical research for NeuroEndocrineImmune diseases.
4. Patients and their families posting the Advocates ExtraordinaireTM logo as their Facebook profile picture during Nov. 8, 9 & 10 to show solidarity with those advocating in Washington.
5. Promoting more signing the Coalition 4 ME/CFS petition. (http://www.change.org/petitions/donna-pickett-rhia-mph-petition-to-restore-cfs-to-the-neurological-chapter-6-in-the-icd-10-cm)
6. A free autographed copy of Lorraine Steefel’s book, “What Nurses Know… Chronic Fatigue Syndrome,” for those who join PANDORA in visiting congressmen or their staff in Washington D.C. on Nov. 10.
7. A free Advocates ExtraordinaireTM pin for advocates participating in Washington D.C.
For those wanting to join in visiting congressmen of their staff on Nov. 10, we ask you send us an email at [email protected] letting us know how many will be coming with you and what city and state you are from. We especially hope the ones who joined us in May will come again to follow up on their efforts then. All who contact us will receive details on attending the online training meeting with all the information you will need.
The training session will include how to be more effective in communicating with congressmen or their staff members. We have a limit as to how many can participate in the online training session. Preference will be given to those who will be joining PANDORA in Washington on Nov. 10. We also encourage anyone wanting to participate in this meeting to submit questions following this note. We will tailor the training session to include answers to these questions as to how to be more effective advocates.
This summer has seen much progress with increased private research funding, researcher collaboration initiatives, groundbreaking studies, a researcher conference and a government agency willing to review a proposal to return CFS to its rightful place in the ICD-10. We are so appreciative of what researchers are doing, other patients are doing and other patient organizations are doing to meet our common goal, an improved quality of life for people with NeuroEndocrineImmune diseases. However, the war has many battles. Influencing government policies is a battle we have not won…. yet. But, together, we can. We invite you to join us. Our event page is https://www.facebook.com/event.php?eid=170953666327194
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