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Power of Pain Foundation

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Nonprofit Overview

Causes: Health, Health Care, Health Support, Medical Research, Patient & Family Support

Mission: The Power of Pain Foundation’s mission is to educate and show support for Chronic Pain Patients, specifically those with Neuropathy Pain conditions including Reflex Sympathetic Dystrophy (RSD), Diabetic Neuropathy, Lyme Disease, MS, and Post Cancer Pain. We fulfill our mission by: * Promoting public and professional awareness of Neuropathy chronic pain conditions * Educating those afflicted with the syndrome, their families, friends and healthcare providers on the disabling pain it causes. * Action-oriented public awareness, education, and pain policy improvement through activities and efforts to eliminate the under treatment of chronic pain.

Results: Each year we participate in up to 75 events that involve education, awareness and combat social isolation for patients, caregivers, and providers.

Target demographics: low-income and under-insured patients, their families, caregivers and providers

Geographic areas served: International

Programs: Educational, Awareness, Social, Access to proper and timely care

Community Stories

54 Stories from Volunteers, Donors & Supporters

3

Volunteer

Rating: 5

I was diagnosed with MS in 1999, Power of Pain Foundation has been VERY helpful to me! I am not sure I would be the person I am today without them!

3

Volunteer

Rating: 5

I am home-bound, but have a spirited of perseverance and tenacity, which could prove to be a positive force in making awareness happen.

I was active as a young student in the church as a youth leader. We had outreach ministries which would visit local nursing homes and were involved with UNICEF.

I modeled on runways in Milano.

In my college years, I was involved in several outreach missions to volunteer for those less advantaged. I was also an officer in Delta Signa Pi, an international business fraternity. I excelled at public speaking.

After college, I was an IT consultant for several large firms here in Atlanta, including Coca Cola, IBM, and BellSouth, now AT&T.

My last official full-time job was at a AT&T in 1998 as a program manager to ensure Y2K compliance. I served in the capacity to unify the fragmented groups to a successful internal audit.

I was involved in a tornado on April 10, 1998. My back was involved and I lost my mobility temporarily.

Through countless visits to orthopedists and neurologists, I was sent to a back pain specialist whom I still see.

In the meantime, I have tried to maintain a positive attitude so that I could manage the pain before it managed me.

In 2011, I had an ER visit which resulted in hospitalization and a blood transfusion.

In 2014, I was sent to the ER again and received an injury which now has evolved into RSD, CRPS. In the meantime, I researched RSD and saw what my feet look like on Wiki.

5 Brandy E.

Volunteer

Rating: 5

Power of Pain is a great leader in the pain community. They help bring people together as well as helping in education. I am honored to be a part of them.

5

General Member of the Public

Rating: 5

I am so glad this foundation exists!! It has been great to know I'm not alone out there and there is wonderful people to turn to for information and advice. Yall do great work!! Thank you!

5

Client Served

Rating: 5

The Power of Pain Foundation has helped me and countless others living with severe neuropathic pain conditions. The founders and leaders are dynamic, compassionate, hard-working individuals who live with the reality of chronic pain and have selflessly chosen to turn that pain into power every day for patients like me. A very worthy and honest organization.

6 Twinkle W.

Board Member

Rating: 5

The National Power of Pain Foundation is productive in pain education, awareness, and access to care implementing opportunities for patient, caregiver, family member and provider involvement by putting a voice to and a spotlight on pain issues. Providing action-oriented public education and pain policy improvement through activities and efforts to eliminate the under treatment of chronic pain and increase proper access to care. The Power of Pain Foundation stresses the value in learning to be your own best advocate and the importance of patient empowerment. I'm happy to be apart of this great over-all team that strives to assist the pain community with free educational events that can be attended in person or by live stream, webinars, educational articles, activities, contests and more.

Previous Stories
13

Volunteer

Rating: 5

For many years I was one of many isolated pain patients who left home only for doctor appointments. Even though I worked to raise awareness, educate and support others it was via online. Joining POPF as their California Ambassador gave me the opportunity to get out into the community a few of times a year and make new memories with my family as we participated together. POPF works with Legislation, Pain Policy efforts toward Patient Access and much more. The Patient Fundraiser Program assists patients in reaching monetary goals toward treatment, surgeries, medications with a donation by POPF to either get started or help them reach their goal. The Mentor Program, Youth in Pain, Motivations From The Nerve Pain Community Newsletter, RSD Quilt, NERVEmber, Partnerships, free in person educational seminars, online webinars, educational and support programs, various national events, Comic Pain Relief, dedicated State and Youth Ambassadors, all offer and provide amazing resources to the nerve pain communities. Powerofpain.org, Rsdcrps.org , nervember.com , powerofpain.org/partnerships

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7 Jodi O.

Board Member

Rating: 5

I have been living with RSD since 1/9/90, and tried almost everything including 5 SCS until it became infected. We moved to AZ from Colorado hoping the weather would help. I met Barby 9 years ago and she became my mentor and friend. Her family started the POPF and they asked me if I wanted to become a volunteer. I was excited to help and eventually they wanted me to become a Board Member. Barby is president of the POPF and she is helping educate 1000's of people through conferences, Comic Pain Relief shows, sports events, and NERVEmber. I have enjoyed helping with NERVEmber, because we wear orange, share our stories, release balloons, participate in daily events, and share our story. We also have RSD Awareness Quilt Project, where people can send in a 12 x 12 square, sharing their story on it. Then the POPF has a group of people that volunteer to sew the squares together to make quilts. We put them up at different events throughout the year. I have found hope again, and believe that I can have Remission. Barby has written 7 books, made 4 Public Service Announcements, and writes a weekly newsletter, and she has several magazine, newspaper and radio articles. She has also been on the cover of several magazine's and she has done several television shows sharing her story. The POPF also added Arachnoiditis to it's list of 150+ neuropathies. We have Melissa Valliere who is a US Army Veteran living with RSD. Melissa is planning on skating (rollerblading) 46 miles in 2 days for NERVEmber and the POPF. Barby also provides us with several Facebook pages, and websites. She also has Barby's You-tube.com. I am fortunate to have met Barby when I did and for finding a true friend and she is someone who offers support, hope, education, tools, and she is a Cheerleader of Hope.

Previous Stories
11

Volunteer

Rating: 5

In 1990 I was diagnosed with Reflex Sympathetic Dystrophy (RSD). In 2006 I became friends with Barby Ingle, who also has RSD. Later that year, her family founded the Power Of Pain Foundation a 501-C-3 charity to help those in Chronic Pain due to a Neuropathy condition. The POPF offers education, awareness, and help. Barby has personally helped me understand RSD more in the last 6 1/2 years, then I did in the 16 years before meeting her. The POPF has a gift of reaching people, and showing them that there is hope and help. The POPF offers classes and events not only in AZ, but all over the US. In 2010 I became an executive board member and since the beginning with a start of 4 board members, they now have 14 ambassadors, 8 executive board members, 13 board of directors, and over 80 event volunteers in several states, that can also teach classes, and host events. The POPF teaches classes to caregivers, patients and providers many of them lack education on chronic pain. The POPF Chairman, Barby Ingle has written 4 successful books on Chronic Pain, and published several articles. She has even done some television, trying to educate the public. I want to say Thank You Barby Ingle and the Power of Pain Foundation, We love you for all you do to advocate for everyone with pain.

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8 Ken Taylor

Board Member

Rating: 5

As a part of POPF since it started in 2006 and became a NPO in 2007, I enjoy being a volunteer and board member, and currently serving as the Executive Director. POPF is a strong and growing organization that promotes awareness and education nerve pain diseases. The work being done to raise awareness and access to care is unique and valuable in the pain community. I am proud to be a part of this great #PowerofPainFoundationTeam

Previous Stories
13

Board Member

Rating: 5

As a part of Power of Pain Foundation i see a lot of lives being touched. POPF is a positive organization that promotes awareness and education for many conditions containing nerve pain as a symptom. It has been a great and gratifying experience helping and getting to know so many people. POPF grows each year on a national scale, expanding programs and projects that encourage and empower people living with chronic pain. I look forward what POPF can become and excited to work with many other great organizations along the way. We will continue the best we can to represent and bring awareness and education to those conditions less heard of. Together we can make a difference and we look forward to making a difference along with you.

Review from Guidestar

7 Brian L

Board Member

Rating: 5

I have been volunteering for the POPF since 2008. I currently serve as a board member for the 2015-2016 years. As the owner of Respond and Rescue and a licensed EMT, I know how important access to care is for the chronically ill. We encourage others to share their stories so that the spotlight on these neuropathy conditions. I personally work to increase knowledge of other EMT and first respondent so when they encounter pain patients in the field, they are sensitive to their pain care needs as well as first response needs and that they understand that additional care is needed over and beyond the typical emergency patient care. Please check out the POPF website for additional information on all of the great education, awareness, social, and access to care programs we have to offer the pain community.

Previous Stories
11

Board Member

Rating: 5

I have been volunteering for the POPF since 2008. I currently serve as a board member for the 2013-2014 years. as the owner of Safety First Training and a licensed EMT, I know how important access to care is for the chronically ill. We encourage others to share their stories so that the spotlight on these neuropathy condition can be made brighter and assistance can become more readily available. The POPF is doing this online, in-person events, social events and through supporting access to care issues on local and national levels! We are also helping patients who tend to isolate themselves get social and into public. This helps create a support system with mentors and pain patients who are in need of hope, ideas, and support. I am proud to be a board member of the Power of Pain Foundation because I see all of the great things that we do on a daily basis to assist patients

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7 Barby I.

Board Member

Rating: 5

Over the past few years the Power of Pain Foundation has grown significantly in the area of awareness of access to care for pain patients. We are in the process of creating a worldwide presents to make a difference. I encourage the public and people with invisible disabilities involving chronic pain to take some time to invest in the POPF Delegate program and other tools and resources offered by the POPF.

Previous Stories
12

Board Member

Rating: 5

The POPF has reached thousands of patients with chronic pain conditions/diseases that we have been able to help with pain resources, social activities, and raising awareness through creative projects such as our NERVEmber program, International RSD Awareness Quilt Project, Sleep Easy Program, State Ambassador program, disease specific information and so much more! I have been apart of the Power of Pain Foundation since its inception in November 2006. It has been a great honor and pleasure to work with so many great volunteers, patients, caregivers, and providers over the years. In January 2013 I was named to the chairman position of the Power of Pain Foundation for 13-14. Being halfway through my term as Chairman I am excited that we are continuing to grow and help so many people. Thanks to so many of you for all of the support and dedication to the pain community.

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11 JsWilkes

Board Member

Rating: 5

As I have attended and sat through many conferences in regards to the conundrum of chronic pain, and RSD/CRPS specifically, I have noticed that many of the concerns expressed surround the inability to find specialists, as well as others suffering, who understand the debilitating effects of chronic pain. As a result, hope and a desire for remission or healing can be lost which can eventually lead to a very destructive and demoralizing lifestyle. Having dealt with RSD and a conglomeration of other health issues myself, I can attest to the difficulties and challenges that these concerns place on one’s life. For me, hope was restored when I met Barby and Ken, founders and executive leaders of the Power of Pain Foundation. Since my meeting with Barby and Ken in September of 2009, I have been introduced to several beneficial treatments and physicians, as well as provided with the opportunity to participate in various events to raise awareness. The Power of Pain Foundation has also been extremely supportive of my thoughts and ideas to reach out and help others who are suffering from similar experiences. I am very proud and grateful to be affiliated with such a superb organization and then to be associated with people as extraordinary as Barby and Ken. They, and others of this great organization, have helped me get my life back on track and continue to be a huge support in all of my current endeavors.

Previous Stories
11

Board Member

Rating: 5

In the spring of 2009, I was diagnosed with RSD. At that time, I had very little knowledge of this painful neuropathy and for the most part, was lost and unsure about how I was going to function with this debilitating form of chronic pain. Later that year, I was introduced to Barby Ingle and her husband Ken, and that's when I encountered a turning point in my life. Barby is the Executive Director of the Power of Pain Foundation and it was through her and this organization that I found hope, guidance, and a surety that I would be able to move forward with my life. I have personally witnessed the powerful and positive impact that this foundation has had in the lives of many people. The Power of Pain Foundation has an unwavering and stalwart dedication to educate and help those of us that are suffering from several different forms of chronic pain. I am extremely honored to be given a chance to become more associated with the Power of Pain Foundation as a board member and give of myself just as Barby and others have given of themselves for me. I will be forever grateful to the Power of Pain Foundation and its members for how this organization has helped me find power over my pain.

9

Client Served

Rating: 5

I am a 23 year old male that has been fighting Rsd since I was 16. I first found out about The Power of Pain foundation last year. My Rsd was spreading and getting worse every day. I had contacted every doctor and organization i could find. Every doctor I saw said that i would be in pain for the rest of my life and there was no way to even manage or slow the progression. I emailed power of pain and was surprised how helpful and kind Barby and ken were. Barby has help me find treatment and has help me realize that you can live a normal life with rsd. Thank you Barby and Ken you have inspired me to continue fighting no matter how bad it gets. I look forward to helping in any way i can.

10 Gayle12

Professional with expertise in this field

Rating: 5

I am a clinical social worker and also host a radio show Brain Train on voiceamerica.com health and wellness channel. I had the opportunity to interview Ms Barby Ingle from the POPF on the show. She was very knowledgable and excellent at communicating their foundations mission, goals, and successes. She is a joy to work with! I have also been involved with them when they were distributing donated mattress' with a program they were involved with in previous years. Everything I have seen and/or been involved in with the POPF has always been a golden success!

10 Joseph A.

Volunteer

Rating: 5

I volunteer with this great organization... bigger and better things every year to help find a cure for various pain disorders...

10 Trudy T.

Volunteer

Rating: 5

Over the years I have seen many organizations come and go. They usually claim to help unknown people in unknown ways. That's what is different with the Power of Pain. They do most of their work on a one-to-one basis. They help real people directly; no matter what a person may need they try to help.

As an Ambassador for the Power of Pain, I am proud to be a part of the organization even in a small way. I have never endorsed or volunteered before, but they made an impact in my life and hope they can in yours.

Previous Stories
8

Volunteer

Rating: 5

My favorite thing about the POPF is their helping people at a personal level. Not pie in the sky where you never know where the money goes, but people-to-people. Since getting RSD/CRPS in 2005, I have worked with many organizations that promote awareness. None come close to what the Power of Pain does as far as support, information and their program for raising awareness at the community level is unparallelled.

7

Professional with expertise in this field

Rating: 5

I have had the pleasure of working in collaboration with Barby from the Power of Pain Foundation. She truly cares about the individuals she works with and makes every effort to provide prompt outreach to those in need of resources and assistance. Thank you Barby and POPF!!!!

7

Client Served

Rating: 5

My daughter has suffered with CRPS for approximately 3 years now and we have truly been through it all when it comes to doctors, treatments, SCS, etc. We have tried everything including holistic and alternative therapies - in fact, some awful treatments such as ketamine infusions had been tried time and time again. As you can imagine, we were beginning to feel as though there was nothing out there for her as the CRPS continued to spread. My daughter often spoke of how she felt no one understood her and of how she felt incredibly hopeless based on her situation and increasing chronic pain.

So, I can't begin to thank God enough for putting The Power of Pain Foundation and all the hope that has come with them into our lives! 'Hope' is exactly what was missing! We first encountered this organization and Barby and Ken Ingle at a pain conference last year (2012). Like I said, they have been amazing! Not only have they been available pretty immediately for any and all questions via email or twitter (this response time goes up in an emergency. It's amazing how much they care, this includes the ambassadors), but Barby was able to direct us towards the book "Remission Impossible" which for the first time really broke things down and actually gave us a game plan - something that I know so many other CRPS patients are lacking. I also have to hugely applaud Illinois ambassador Chris Greulich for being so patient and extraordinarily helpful in terms of helping my family figure out insurance for my daughter's very costly treatments. Again, thank you Lord for the Power of Pain Foundation!!!

Concluding, I don't know what we would do without The Power of Pain! The hope and community alone has been enough to allow for victories we only dreamed of for her before! I've read a few of the other reviews and I urge any of you with negative things to say simply to write in and ask for what it is that you're looking for. I have no doubt that they'll be able to accommodate you in the same way that they have so kindly accommodated us.

THANK YOU POWER OF PAIN!!!

1

General Member of the Public

Rating: 1

This organization has done NOTHING to help patients. They are interested in raising funds for their own purposes. I have suffered from CRPS for years, when I contacted them for advice and help, they were unhelpful and asked me for donations. All the 'great' reviews on this site are from Board members.

Comments ( 1 )

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Power of Pain Foundation 09/15/2013

I think that you have us confused with another charity. We keep track of all phone calls to our ambassadors lines through Google voice and there is no record of your call. As this site keeps track of who leaves comments it is clear that your "all board members" is actually 6 of 33 reviews. All of our education programs for the past 7 years have been offered FREE to healthcare providers and the public (including/and especially patients, their families and friends). Just yesterday we hosted another large conference free of charge that received local media attention, was broadcast live so anyone in the world with internet access could get the information if they weren't able to attend in person, had top doctors from the pain community as presenters, provided breakfast, lunch and snack as well as bags full of resources and tools for the in-person attendees to use at home after the conference. Our mission is clearly stated on the about us tab on our website www.powerofpain.org. The Power of Pain Foundation’s mission is to educate and show support for Chronic Pain Patients, specifically those with Neuropathy Pain conditions. We fulfill our mission by: Promoting public and professional awareness of Neuropathy chronic pain conditions, Educating those afflicted with these diseases, their families, friends and healthcare providers on the disabling pain it causes, and provide action-oriented public education, and pain policy improvement through activities and efforts to eliminate the under treatment of chronic pain. Once again leading me to the conclusion, that you have our foundation mixed up with another.

3

General Member of the Public

Rating: 1

I was diagnosed with RSD back in 2012 after a motor vehicle accident. I have been to many doctors, support groups and read all about it to understand this disease. This organization clearly does not do anything to help patients with RSD. I was disappointed to find they spend most of their time in raising funds and I am not clear as to what they do with the funds. Certainly not help patients. I am not someone who speaks ill of anyone but clearly this organization's goals are to provide charity to the Ingle clan.

Comments ( 1 )

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Power of Pain Foundation 09/07/2013

Our nonprofit 990 forms are public information and have been available on our website, powerofpain.org, since the completing of our first year.

9 Brian Schafer

Client Served

Rating: 5

Power of Pain Foundation is an exceptional organization. They work far beyond expectations to make families like mine feel good even when facing a harsh situation financially and emotionally dealing with chronic pain diseases. They have helped me with my CRPS struggles, and helped my daughter that has had spinal surgeries 3 times in the last 2 years. We have spent a lot of time in hospitals over the past few years. One of the best present as a parent was when we saw my daughters face light up like it was Christmas when we received a box of toys from the Power of Pain during one of her hospital stays. Their staff works so hard to make us feel comfortable and they continue to help put our mind at ease when it comes to the great information they were able to provide us and my daughters doctors. They also helped us get consultations with a leading experts and we are both on a better treatment paths now. Every volunteer was amazing from the beginning of our connection to them in 2010 and as we continue to work with them today. We love Power of Pain Foundation and how they are so helpful with people facing chronic pain. Everyone that works in there has been great with us. Brian Schafer and family