Newsletter - PANDORA Org

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PANDORA ORG Winter 2014 Issue

Pandora Org Newsletter

Pandora Advancing Research: Research Grants & Webinar Events Starting in January, Pandora Org will directly fund research through matching grants and offer webinars to researchers. This is an important step to not only help private research with necessary research funding but make a statement and draw attention to the enormous need for research funding for Myalgic encephalomyelitis (commonly referred to as Chronic fatigue Syndrome) and fibromyalgia. The NIH last year only funded ME/CFS and fibromyalgia $5 million and $11 million respectively. As we advocate to substantially increase government funding, we believe it is imperative to raise awareness for private research. We are excited to have Dr. Younger and Dr. Klimas scheduled to present their research. Registration and how to participate in funding research will be available on January 5th. If you are a researcher and would like more information about our programs, please contact us.

In This Issue 

Pandora Advancing Research



Pandora Survey Published



President’s Report and Promise



Covered in Love A Personal Story



Pandora Delivers Goes Live



Patients’ Rights



Brochures



Help Wanted

Jarred Younger, Ph.D. University of Alabama at Birmingham Friday, January 23 1:30 PM EST ————— Nancy Klimas, M.D. Nova Southeastern University Tuesday, February 24 2:00 PM EST

Pandora Survey Results Published A study entitled “Lack of Knowledgeable Healthcare Access for Patients with Neuro-endocrine-immune Diseases” was published in Frontiers in Clinical Medicine. The study was the result of a Pandora Org 2012 online survey to gather information in preparation for a Neuro-endocrine-immune (NEI) Center™ of Excellence. There were 1294 participants and the survey’s intent was to see how satisfied patients were with their current clinical care, and if medical schools and specialists were properly trained in these complex diseases. Dr Leonard Jason co-authored the article with Tina Tidmore, Lori Chapo Kroger, RN and Marly Silverman.. The results were presented in a poster at the 2014 IACFSME conference. Results indicate that 5% of people with NEIDS searched more than 22 years for a diagnosis. And, 75% of respondents are not satisfied with their care, or have to travel more than an hour to get adequate care. You can see the full study here.

Advancing Research for a Cure

Our Promise to You

Pandora Org Board of Directors

Vice President Shauna Mitchell Treasurer Teresa Dutmer Laurie DeDecker, RN

Dr. Ruth Walkotten Charlene White Dave Hatfield, D.M. Sandi Lanford Mike Munoz Harvey Keith Carden

Ambassadors Donna Robillard

Sandy Sizemore Camille Carswell Shannon Cassidy Kate Benson

Advisors Policy Advisor Kenneth Friedman, Ph.D. Medical Advisor Dr. Andreas Kogelnik

Policy Advisor Dennis Mangan, MD

Pandora: Covering Patients in Love A Personal Story

There is nothing scarier than thinking you’re alone in a dire situation. We all have been there before. But nobody knows that feeling better than those with neuro-endocrine-immune diseases (NEIDs). This is where PANDORA Org patient assistance programs plays a role.

Watch the video “Covered in Love”

Although PANDORA Org has many forms of direct practical assistance to those impacted by these illnesses, our Covered in Love program provides immense emotional support. This program donates handmade quilts to patients experiencing a loss, undergoing distressing circumstances or facing a scary medical procedure. These quilts are delivered to those feeling alone and facing hardships allowing them to know that others are thinking about them. What makes these quilts so special is that other patients with NEIDs are the ones who provide the quilts to give to other ill individuals. This allows those sewing the quilts a chance to give back, while creating a community for those with NEIDs even though they may be states apart. Donna Robillard, as the coordinator of the Covered in Love program, knows well of the satisfaction it brings to give these quilts. Donna, who was diagnosed with ME over twenty years ago, expresses why she is involved with PANDORA Org’s patient assistance program: “I did not expect so many other people, beside the receiver, to feel that sense of joy as well. It was a way for someone who was struggling to feel the physical feel of a hug. How do you give a hug to someone who is thousands of miles away, and you have never met.” “The program is dear to me because not only do I see the joy it brings to others, but because it gives me a purpose and a creative outlet. I know I am bringing joy and love to someone who is struggling. When you are not able to accomplish much in a day, how do you help a friend who is struggling miles away? We can barely take care of ourselves, but I am able to move beyond my own illness, my own issues and problems and help others . I can pretend that I have a normal purpose.” While giving the quilts is beyond satisfying, receiving a quilt has become an overall symbol of hope and togetherness. Ellen Phillips (right) knows this to be true. Ellen, who has been suffering from Fibromyalgia and ME for several decades now, was going through a hard time when she received her quilt in the mail. Ellen reflects on the gift: “Getting the Covered in Love quilt was just such an amazingly beautiful and uplifting gift. The quilt came at a time when I was struggling very much. It arrived at a time of setback, poor sleep, and being alone with this. I wept when I opened the package. To be comforted in such a beautiful way at such a difficult time is priceless beyond words. It made me feel love and comforted - to know that I am not alone; that others understand and are reaching out in love, compassion, and support.” The Covered in Love program is just one of the many efforts PANDORA Org takes on to make this world a better place for those with NEIDs. But in order to continue with programs like Covered in Love, funding is needed. PANDORA Org relies on individual contributions to continue the fight against suffering from NEIDs. Please consider donating to this wonderful program. *Names are changed to protect privacy.

“Improving patient quality of life



Pandora Delivers: Helping Patients Recover Pandora Org last week launched a new patient assistance program called Pandora Delivers. We arrange for nutritious homemade meals to be delivered nationwide to patients who are too sick to cook for themselves. Our first delivery was to Jeanie, who just got out of the hospital and does not have a caregiver to help her cook meals. The homemade meals are easy to prepare and last up to 12 days in the refrigerator. Jeanie said, “It is really heartwarming. It is so important. You don’t think about coming home and having the capabilities of not doing it yourself. This is really wonderful. Thank You!” We are asking that you give generously to help us help patients with this wonderful program. If you know someone in need of short term help, please contact us. Pandora’s Patient Assistance Programs

Patients raising money for Pandora Org Sherry Hyman wanted to help raise money for Pandora’s patient assistance programs and help us touch the lives of others. She decided to hold an Avon fundraiser. This was an easy way for Sherry to be involved. Sherry gave profits of sales for one month to Pandora Org. Her efforts created good in the world because her donation bought meals for the sick. We are grateful to Sherry for raising money for Pandora Delivers. If you would like to hold a fundraiser, please contact us.

Logan’s to the Rescue... We would like to thank Logan’s Roadhouse for holding a fundraiser for Pandora Org. The Raise the Steaks fundraiser gave 20% on each meal during a two day period. Corporate fundraiser are so important to Pandora patient assistance programs and to the patients we help, and it helps your business as well. For corporate programs contact us.

As you shop this holiday season, please consider using our Amazon program. You will get the same great shopping experience and 5-10% goes to fund Pandora’s patient assistance programs.

6 Steps to Take When your Patients’ Rights Have Been Violated If you have to be hospitalized you expect to feel safe and to have your patients’ rights honored. But what happens when those rights are violated? Recently, there have been some horrific stories of hospitals obtaining court orders to make children wards of the state when parents, question or deny treatment plans. Justina Pelletier was held for 16 months at Boston Children’s Hospital, and her parents were denied the right to visit her. Her story received national attention when her father disobeyed a gag order and told their story on Dr. Phil.

The American Hospital Association has developed the Patient’s Bill of Right to protect you and your loved ones. But, what do you do when your rights have been violated? Recently, Pandora Org received a frantic phone call on our support line. Sharon’s* teenage daughter, Lisa*, was hospitalized but the quality of care and several patients’ rights were not being honored. A string of surreal events happened and medical staff had contradicting stories. Their rights were betrayed when Lisa was denied a second opinion, denied transfer to the pediatric unit and denied a transfer to a children’s hospital. The mother was vigilant in advocating for the best treatment course for her daughter, but she felt defeated and bullied. The oppressive behavior of staff made it apparent that they were using stall tactics so they could get a court order. It was urgent to get Lisa to a safer hospital. So what were the next steps? This strategy was given to Sharon to protect her and her daughter, but they can also work for you if your medical care and safety have been compromised.

“Know your patients’ rights and understand that you can take positive measures to protect yourself.”



Talk to the hospital’s patient liaison or patient advocate. Remember though that they work for the hospital and you should weigh if their advice and actions are meeting your needs, or if they are pacifying you while protecting the staff. Sharon had already spoken to the patient advocate but there was no follow-through.



Call your insurance company. Tell them your quality of care is being compromised. Give them the details of events. In the case of Lisa, the insurance company gave permission for her to leave against medical advice (AMA) and they pre-approved admittance and treatment in a children’s hospital. This gave power back to the mother. The insurance company has attorneys who will take care of legal issues if billing problems arise.



Do not sign discharge papers, or any documents. If you do, it could work against your insurance company’s legal power. If you sign discharge papers, then you are not leaving against medical advice.



Do not fall for scare tactics from hospital staff. We told Sharon to brace herself for pressure from staff when she told them she is taking Lisa to another hospital. A big “bouncer” stood in Lisa’s room as Sharon packed up belongings. The nurses refused to unhook the IV line. Sharon had to do it herself with directions from our president Lori Kroger, who is also a registered nurse. Methods were used to harass Sharon and Lisa.



Call the police. Sharon and Lisa were threatened that security would be called to stop them from leaving. Pandora Org advised Sharon to call their bluff and to call the police for a safe escort out of the hospital



Security cannot touch you. They can talk to you, yell at you, and intimidate you, but they cannot forcibly detain you. You can tell them to step back and walk out the door.

Sharon and Lisa escaped from the hospital before more harm could be done! Ironically, Child Protective Services called them when they were on their way to the children’s hospital. So the hospital did plan to make Lisa a ward of the state. Thank goodness that did not happen! Lisa was admitted to a children’s hospital where she received excellent care. Make sure you know your patients’ rights and understand that you can take positive measures to protect yourself.

Three new PANDORA Org brochures are available for patients and to educate physicians: These are currently being distributed to individuals and physicians. If you are a physician with a clinic and would like to have these to distribute to your patients or a patient and would like to show these to your physician, please contact us. They are also printable from our website.

Contact Us Pandora Org 3625 Orchard View Traverse City, MI 49684 Help Line and Info: (231) 421-8350

Email: [email protected] Visit us on the web at

pandoraorg.net

Education Programs

Pandora Org 3625 Orchard View Traverse City, MI 49684

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Can you give a little time to make a big difference to those living with NEIDs? We need individuals to join the Pandora team. If interested in making the world a better place for the 20 million individuals afflicted with NEIDs, please contact Mike Munoz

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