Patient Alliance Neuroendocrineimmu Disorders Org For Resech & Adv Inc

Rating: 4.42 stars   78 reviews

Issues: Health

Location: 3625 Orchard View Traverse City MI 49684 USA

Mission: Our mission is to provide educational programs for patients, caregivers, physicians, researchers and the communities where awareness and services to the patient community are lacking. Our mission includes advocacy and grass roots initiatives to raise awareness for neuroendocrineimmune disorders in Florida and beyond. We support and advocate for increased scientific research to find a cure for these debilitating and disabling illnesses. Our goals are to encourage and assist patients and their families in leading productive and fulfilling lives.
Results: This past July we participated in the Chase Community Giving project. The public voted for us and we ranked number 162 on the list of the top 200 small charities in the U.S. winning a $20K grant to be applied for our daily operations and apply toward the advocacy efforts of the NEI Center. The NEI Centerâ„¢. This center will be the first research center of its kind. Individuals in need of assistance will benefit from cutting edge science, clinical support, and research, including our computer-aided disease diagnosis and treatment (CADDT) system, which will be specifically designed for multi-system illnesses and complex diseases. The end result will be world-wide access for patients, who will be able to find community social services and resources that will help them feel better, live longer and enhance their quality of life.
Target demographics: Individuals stricken with NeuroEndocrineImmune Disorders.
Direct beneficiaries per year: Patient and caregivers who participate in our educational community events and on our advocacy grass roots campaigns. We have seen our advocacy program steadily increase its effectiveness by the number of individuals joining our Facebook page and our Cause projects pages on Facebook.
Programs: Advocates Extraordinaire(tm), a leadership advocacy program aimed to teach patients to express effectively their personal voices and work in collaboration with our board to implement fund raising, grass roots campaigns, media awareness. One Voice, One Community, One Cause(tm), an advocacy program dedicated to bring unity to our overall community, We aim to reduce the gap between the many organizations and patient groups working as a bridge to facilitate understanding, foster collaboration and increase trust among the groups and other stakeholders. The goal of the program is to engage our health government agencies in a much needed conversation and assure a seat at the table on issues affecting public health. Causes on Facebook: The NEI Center
2014 Top-Rated Nonprofit
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EIN 55-0795076
231-360-6830
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

PANDORAORG 's concern for those of us with invisible illnesses such as ME/CFS is honest and from the heart. No other organization I know is as personally involved with the patient community. From quilts to wrap a patient in love, to advocacy projects, physician education, to feeding a debilitated NEIDS patient, PANDORAORG ensures a better today and tomorrow for all of us.

When was your last experience with this nonprofit?

2014

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Rating: 5 stars  

2 people found this review helpful

I help with the "Covered In Love" patient support area where we send out Handmade quilts to patients who are struggling with difficulties beyond their normal illness circumstances. In 6 months time, 3 volunteers have been able to send out 28 hand made quilts to patients not only in Michigan, but all area's of the United States, Canada, the UK, and Europe. This program brings so much joy and support to the patients who receive them. Most say they came at the darkest hours of their illness. It is a pleasure to be a part of this awesome organization. The integrity, compassion, and dedication of the board is beyond words.

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1 previous review
Rating: 5 stars  

5 people found this review helpful

I can not put to words what a ray of hope PANDORA is to the patient population that they serve. They are our voice at local, state, and national events. They let us know of complicated issues involving the FDA and CDC, etc. and put it in terms those us of with cognitive issues can understand. PANDORA educates health care providers so that they understand what we go through and keep them up-to-date on the latest research. They have pulled together the patient population that they serve, to have a voice, a loud voice, in an otherwise voiceless illness. We are the forgotten. We are the hard to treat and easy to ignore patients. PANDORA is a remarkable organization, with an incredible board of creative and inspiring people, many who know first hand what these illnesses can do to families. The patient population is very thankful to have PANDORA on our side, to advocate, educate, and enlighten us.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 4 stars  

2 people found this review helpful

Pandoraorg is here to help. They have done a wonderful job gathering information pertaining to those that suffer from many medical conditions and spreading the word. They also work to improve the lives of those suffering.

When was your last experience with this nonprofit?

2014

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Rating: 5 stars  

2 people found this review helpful

When I first became ill, I really had nowhere to go for information. Then I was directed to PANDORA ORG. The information is up-to-date and very informative about my own illness as well as many other neuroendocrineimmune disorders. This organization sends people to CDC meetings and FDA meetings as well as other venues where more support and help is needed to keep these organizations aware of patient's needs.
The patient is kept well informed of what progress is made as far as government research and physician education is concerned. Pandora Org is all volunteers so there is no worry of funds being misdirected or misused. Every thing is for the patient. Their website shows just hard they work and there is so much information there.
Patients can ask questions and are given up to the minute information and support. The voice of the patient is heard and conveyed to the government powers that be.
Pandora Org started out small, but has grown to a national level with members all over the U.S. Even people in other countries can come onto the website or Facebook page to offer support or ideas and collect the same.
Pandora Org offers HOPE!

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1 previous review
Rating: 5 stars  

4 people found this review helpful

P.A.N.D.O.R.A. started with just one person who needed information about M.E. and not finding what she needed, she did research. This research led to more information being able to be shared by others with this disorder. Then it grew and grew to what it is today. There are so many of us with these devastating neurological disorders and illnesses who are in terrible pain who now come to this group for help. P.A.N.D.O.R.A. now has the ability to help so many people with many different neuro disorders around the United States. This shows us that not only can we all help others but just look what one person can do!

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

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Rating: 3 stars  

2 people found this review helpful

This group has done well in Michigan and is working on bringing their services to other states and county's across the USA.

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Rating: 5 stars  

4 people found this review helpful

PANDORA Org is a wonderful organization that helps our patient group in so many ways. For those who need information about their illness, they can find valuable information that they can also share with their doctor. PANDORA Org works to educate medical professionals about diseases that are often misunderstood. PANDORA Org's national efforts to help patients and advocate for them is invaluable. I am amazed at the many ways PANDORA Org serves our patient group!!! Thank you PANDORA for your work for our patient group!!!

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Rating: 5 stars  

4 people found this review helpful

When I first became ill with this devastating disease, the first information I took seriously was a few websites that had "Memorial Lists" of people who suffered greatly before their disease overcame them. However, P.A.N.D.O.R.A was the first Patient Centered Organization that I could trust for accurate, and hopeful education regarding my disease day by day. There was much support for me at all stages of my deteriorating health. As time went on, I was better informed to focus on all the ways my Quality of Life can be improved. This is a very frustrating illness to get medical care for, but with the help of P.A.N.D.O.R.A's long suffering expertise, I have grown immensely in understanding how my life can be stronger on a daily basis.

I have learned to be an advocate for myself and others thanks to Lori and Marly. I enjoy any opportunity to interact with the staff and Leadership of P.A.N.D.O.R.A. I believe with the coaching, advocacy, education opportunities and my own personal, individual assistance, my life has been greatly improved in spite of the illness. P.A.N.D.O.R.A enlightens HOPE for millions who seek them for comfort.

If I had to make changes to this organization, I would...

If there were changes to be made to P.A.N.D.O.R.A I would work to gain increased financial support for the Organization so that more people can live as independently as possible without any diminished Quality of their Life. P.A.N.D.O.R.A's efforts to expand, EDUCATE full scale, and Support people with complex neuro-immune diseases is highly commendable. I know with more resources P.A.N.D.O.R.A's Mission for less suffering will prevail.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

5 people found this review helpful

ME/CFS has a horribly negative impact on millions of lives. PANDORA is a positive voice for those of us who are ill. The people are so warm, friendly, helpful, and giving. I just can't say enough good things about this organization, and will volunteer to help whenever I am able.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

I am a member of PANDORA and have been for many years. This organization does many amazing things for the very sick with neurological, endocrine and immune system diseases and disorders. To my knowledge there is NOT another organization that is helping all of these very sick people in so many areas. The head of PANDORA, Marla Silverman, is a CFS sick person who knocks herself out daily trying to do what is best for the entire community as well as individuals in desperate need. PANDORA has provided the infrastrcutre (financing through PANFORA) for a new "Democratic Advocacy" for those with ME/CFS. This group is called ME/CFS Worldwide Patient Alliance. I am a volunteer in this group and we have raised money to get a 1/2 page AD in the Washington Post alerting the US and international public about ME/CFS and the newly discovered and infectious third human retrovirus. In four short months, this advocacy group has over 1,600 members and has raised over $10K. This is an amazing achievement. Ms. Silverman came up with the idea of a patient-driven/patient run advocacy and it has worked. It was what the very sick wanted: to have their voices heard by the governments and the public. PANFORA and Marla Silverman have had an enormous and critical impact on the neruoendocrineimmune sick. PANDORA and Marla Silverman are well known and highly respected in the communities they work within. There is no negative comments or changes that need to be made. PANDORA is a model for what a non-profit SHOULD be doing.

I've personally experienced the results of this organization in...

This organization is helping to get my family and myself the government funding for major research on a very serious and life-destroying disease. I voluntered to help with PANDORA and the ME/CFS Worldwide Patient Alliance because of the steller reputation of the organization and the people behind the organization. Millions would have continued to be sick without PANDORA's constant efforts to help all of us. PANDORA has given a major presence to all of the invisible sick who are bedridden, housebound.

If I had to make changes to this organization, I would...

Get them more funding to continue to do the many things that they are involved in. Millions of people depened upon PANDORA to help them as individuals. Millions more depend upon PANDORA to get the governments to do their jobs and get funding for critical research that affects every single person worldwide.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

What one change could this group make that would improve your volunteer experience?

There are NO changes that I would make to this group. It operates in the most effective manner I have seen as a non-profit or a for-profit. Again, this organization is a model for all other non-profits.

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

My volunteer experience has had a profound effect on me. I was given a way to help get funding for critical research, clinical trials, and public promotion. This gave me "power" and a voice in getting what is needed for the disease that both my husband and I share. The people associated with PANDORA are all the most decent, kind, caring and super bright, hard-working and effective people I have encountered. I have made real friends and this has helped me not to feel so isolated and alone. I have a purpose even though I am terribly sick. This need for being "of value" and having a purpose is part of being a human. We need to be needed and we want to be a part of something important and that helps many other very sick people. Also, trying to do fundraising and having to communicate has in fact helped my brain (I have severe brain damage). PANDORA has given me and many people like me a real sense of purpose. We know we are making major changes that help countless millions of terribly sick people - many of whom are in dire shape, living on the streets, without and medical care, and are at the point of suicide. PANDORA and Marla Silverman have literally stepped in and stopped those at the end and without hope - lives have been saved and many more lives will be bettered and saved.

How did this volunteer experience make you feel?

This volunteer experience has been wonderful for me. Again, I am useful and have a purpose even as a very sick person with severe cognitive problems. It does not matter that I am so very physically and mentally limited. PANDORA and the staff are gentle, calm and patient with me and others as we all try to do our volunteer work. This aspect of being careful and concerned about your volunteers is important and many non-profits seem to forget this aspect. Those that volunteer for a non-profit also need help and support so that they CAN volunteer. I and many other people continue to volunteer for PANDORA and their causes on an almost daily basis. That is rather telling. We STAY with this non-profit because we fervently believe in what it is doing and can actually see all the work being translated into very real good.

When was your last experience with this nonprofit?

2010

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