Having put several alcohol and drug programs together it is not unusual for the underlying issue to be their pain specialist not treating pain, especially chronic intractable pain, as the physicians should. By the time I see and assess the person they often have legal charges related to their being "forced to by pain medication off the street". This is something that we already have an answer to and the US Pain Foundation promotes that daily.
The US Pain Foundation helps more people than many realize. I fully support their fundraising and non-profit status.
Many times chronic pain is invisible to the outside world. I personally know several people with chronic pain and know of their struggles and battles with this horrible condition. Their suffering and depression can be unbearable. The USPainFoundation brings not only awareness to these silent warriors but a sense of hope and community to those suffering with pain. They realize they are not the only ones with these conditions and they are able to learn and relate through others' stories and also learn of alternative coping and healing mechanisms. This organization can be very powerful and needs more recognition and exposure.
The US Pain Foundation has done amazing work. I hope people donate to this cause as it is so very important. The foundation fights hard for us in pain.
God bless Pail Gileno for starting this non-profit foundation.
I am a parent to a child who was diagnosed with chronic pain at the age of 6. She is now 12 and living a full life despite her pain. organizations like this that supports an under-served community and also raise awareness in chronic pain are so valuable! Thank you!
I am a member of the ambassador program at the U.S. Pain foundation. My pain experiences started during my early teen years. I was looking for a way to give back to the community and be able to help others with their pain experience as well as meet others going through similar experiences. I have gained so much from the organization. The materials they have to help us in the pain community are very valuable. When I contacted htm I didn't expect much other then a referral to disease specific groups that I already was dealing with but the generalized referrals and materials helped me more then I thought they ever would.
I am part of the US pain Foundation Ambassador Program, and have found the experience richly immersing and rewarding. The website is helpful, and the people are encouraging. There are many useful resources, and various projects for the public to be involved in as well as information to acquire.
My pain ride started 31 years ago when I was still residing in the England, it all began with an innocuous injury to my right ring finger when playing water Polo. After some 16 surgeries as well as many other painful attempts to reduce the pain I was told that I had RSD/CRPS and would have to live the rest of my life in pain. As a result of the cold damp weather in England my family and I emigrated to the United States in 1991. Having lived in Florida for the first 14 years in the US we then moved to Pennsylvania for a job that was promised to be just a desk job for myself as we had already established that operating machinery of any kind aggravated my RSD. Unfortunately, the promise that we were made did not materialize and I was effectively forced to operate machinery which resulted in aggravating the RSD.
I became aware of US pain foundation after reading the exceptional book by Nicole Hemmenway titled "No it is not in my head". After my initial contact with Paul Gileno my wife and I were invited to the launch of the invisible project where we met Nicole and after visiting other support groups I was at last impressed by the candor and integrity of both Paul and Nicole. Instead of the usual moaning and groaning the US pain foundation was a breath of fresh air because they embraced the notion that pain was invisible and that we must work together to bring in to the public domain the fact that pain and people suffering from it is very real.
I cannot stress sufficiently how impressed I have been with the US pain foundation and with Nicole and Paul's vision of bringing pain from obscurity into the public domain. They understand that those of us who suffer in silence must work with each other not for sympathy but for empathy and that we must become very real so as to increase the ability of researchers to find cures.
Finally, there is an organization run by people who suffer and understand the very realities of living with pain but are working to help those of us who also live with pain 24/7 as well as mobilizing the pain community to help ourselves by becoming lobbyists both at state and federal levels.
The US pain foundation has breathed a new life into me and I believe they do so for many other pain sufferers. I hope that I am able to assist others as well as the foundation and particularly Paul and Nicole who are extraordinary people. They have developed a charitable organization from absolutely nothing into an amazing organization and have hired others in pain who are also extremely helpful and well organized individuals and I appreciate every single person associated with the organization.
I became part of US Pain after I was invited to be a participant in their INvisible Project. I saw what this project meant to me and to those who saw the finished project and was amazed. I love that the Foundation was started and is run by people who have chronic pain themselves. It makes them so compassionate and understanding of everything that those of us with chronic pain suffer with. Seeing what US Pain is capable of is truly amazing and I've seen it most prominently through their events is truly amazing. Their willingness to reach out to individuals in need is unparalleled and unmatched by any other Foundation I have seen, they are one of a kind and I am proud to be a part of it. Paul Gileno, the founder and president, is a very honest, kind, and hard-working man. He listens to everything I have to say and all of my crazy ideas and tries his best to make all of them come to fruition. He is a man of principle, character, and heart.
I am new to USPain Foundation this year. I found them to he helpful and encouraging so much that I have become a volunteer ambassador. I am a long time chronic pain sufferer and this has helped me to get the word out and educate fellow sufferers and educate others to the work this organization is doing. I have been taking baby steps with them, mostly because of my ongoing pain, but I look forward to getting the word out more on this worthwhile non-profit organization . Thank you.
As someone who has spent the past seven years dealing with the myriad implications that come with CRPS/RSD, as well as 25+ years of severe, chronic back problems, I have only recently begun to draw on the amazing resources that U.S. Pain Foundation provides. I've felt so inspired by all they do, that I've become a Pain Ambassador. It feels wonderful to know that there is a community of people out there who understand what I am going through on a daily basis, especially being a mother of two young children. I also find the information that is available with respect to medical and professional resources, to be invaluable. I am excited to become more involved, and to give back to an organization that is so worthwhile, and that is so desperately needed in these times!
I am a chronic pain patient, so I struggle with physical issues, which can lead to depression. One of the most helpful things I've found is group support, and the US Pain Foundation provides that community. Here is an entire group of people who understand what I go through, every day, just to function. I became an "ambassador" for them, because I want to let everyone struggling with pain know that they are NEVER ALONE.
I have been volunteering for US Pain for many years. It all started when I had a life changing accident and began experiencing severe, chronic pain on a daily basis. I fell down a flight of stairs and ruptured several disks in my back, tore my rotator cuff, and broke my wrist and elbow. I went through three spine surgeries, rotator cuff surgery, and a couple of other surgeries. My injuries were healed, but my severe pain did not go away. I developed something called Complex Regional pain syndrome. It causes severe, burning pain 24 hours a day. I also have Fibromyalgia and Lupus. I was no longer able to work or participate in many of the activities that I loved so much. There were no local support groups in my area, so I began looking online for some support. I joined a yahoo chat group which was very popular at the time. Paul Gileno was also participating in the yahoo group. Paul was in the process of transitioning his state wide support group into a national support group. I was excited to jump on board and do whatever I could do to help. US Pain Foundation is a national support group for people in Chronic Pain. The Volunteers for US Pain are people that are suffering with Chronic pain themselves. US pain works hard to do whatever they can do to make life better for everyone suffering from Chronic Pain. I don't know what I would have done without this group. I was able to meet people that understood what I was going through and helped walk me through it. Thank you US Pain for all you do to help those in Chronic pain.
I am a new Ambassador for the US Pain Foundation and a long-time chronic pain sufferer.
This foundation is an amazing resource for those of us in chronic pain and I am so excited to raise awareness of chronic pain, be an advocate and be associated with this group!
They have a wealth of information I can use to help others personally and by working with our policy makers to effect change in favor of chronic pain patients.
I am consistently impressed by US Pain Foundation. Although I do not personally suffer from chronic pain, I am personally affected by very close friends who do. US Pain Foundation is a resource of knowledge, a safe haven to relate to others suffering too, and that extra boost of love, care and support to help you get through the toughest times. Words cannot accurately describe or justify how grateful I am for US Pain Foundation.
The US Pain Foundation is an amazing non profit group. I was diagnosed with 2 different neurological conditions , one in 1995 after being stopped at a red light and being rear ended by a drunk driver who drove right through my trunk. All my life I had been a professional actress/ dancer/ singer and wound up with a hideously painful condition called RSD or CRPS. The other is Dystonia which causes severe uncontrollable muscle spasm.
The US pain Foundation has been AS IMPORTANT to me as any other part of my treatment for these conditions that have no known cause nor cure at this point. I would no sooner stop going to their website than I would stop seeing my doctors or seeing my therapist. The support from other members in the same condition I am in, who KNOW... Really know what I am going though is more important than I can ever say! I cried when I first spoke to someone with RSD that said I know how you feel! I didn't have to explain all the terribly hard things an RSD patient goes through silently and most of the time invisibly ( to the rest of the world ) every single day. The trying times with our families, the painful treatments that we will go through... And the Pain foundation is there to oversee everything and help us all! Like I said, AS important to me as my doctor ! Sometimes maybe even more !
As a patient advocate of many years for ME/CFS, and now the cofounder of a patient 2.0 startup, I have utter respect and admiration for what founder Paul and VP Nicole have done with USPF. Their dedication to effecting change through multimedia, public policy, and community events is a model that every patient-focused non-profit should follow.
The US Pain Foundation is here to help the nearly 100 million Anericanas who live with and suffer from chronic pain of all forms, whether from an accident or illness. The Foundation offers hope and helps to empower the person who's suffering from chronic pain. Being a volunteer, I've been able to help from my home. Just a simple phone call has made a difference in the lives of not only the sufferer, but also the family. After I talked with, in both instances the caregiver, I felt like I not only helped each fAmily, but I felt as if I helped myself. The US Pain Foundation, offers support for both the individual and their family. They have a lot of resource material available, including many websites. After I joined the Foundation, I became an Ambassador for them. I can go out into the community, to health fairs or simply set up a table at a hospital or clinic and have pamphlets, brochures and other material available. I also share my story of what it's like living with chronic pain. Even though I am an Ambassador for the US Pain foundation, many times the foundation and other US Pain Foundation Ambassador have helped me. The US Pain Foundation is a wonderful volunteer organization. I'm proud and honored to be a part of this foundation.
I have had RSD/CRPS, the most painful condition known to medicine, for over 4 years. There is no cure for this syndrome and there are very few effective treatments.
The US Pain Foundation has been a source of extremely important information and support to me in my struggle to deal with this condition. They offer important scientific and regulatory information daily via Facebook, help us understand the changes in regulations that affect our care, and they provide us with a voice in speaking out for patients who cannot always effectively protect their own interests.
Since many pain patients have "invisible" symptoms, they have the additional problem of not always being believed. The US Pain Foundation understands all of the problems that are unique to pain patients and they are an invaluable source of support in understanding and addressing the difficulties we face.
Recently, I've been depending on them even more with the potential changes in legislation regarding some of the few medications that make my life worth living. I cannot express how important this organization is for me, knowing that they will do whatever is necessary to try to protect my interests, and those of all the people like me, who have a fragile existence that can be shattered by lawmakers, lawyers and even doctors who do not believe in our symptoms or in the importance of pallative care.
Thank you, Paul Gileno, for the work that you have done for all of us. Thank you for supporting our heroes, like our dearest Kaitlyn Pintor and Nicole Hemmenway! Great job, please know we appreciate all that you do!
The U.S. Pain Foundation brings understanding and hope to the nearly 100 million Americans who deal with pain. My husband and I recently attended an event to launch the INvisible project, which honors and acknowledges though living with pain everyday through photos and stories. We were so touched by the experience and learned so much in one evening. I encourage those who have an opportunity to see the exhibit and support this organization. The Director of the INvisible Project Nicole Hemmenway stated in her opening remarks that "pain is an invisible disease." I believe that that the U.S. Pain Foundation and the INvisible project educates those who might not be aware of this disease and makes its VISIBLE!
US Pain is a tremendous organization and my experience with both their founder (Paul) and their director (Nicole) have been compelling and educational. The time, care and energy they both put forth into this important cause is awesome. I have also been fortunate enough to meet with members of the community that they advocate for and attend their educational events. The people and families that chronic pain impacts are much greater in number and severity than I ever realized. US Pain gives this group a voice and works tirelessly on their behalf.