Today we’d like to introduce you to Barby Ingle.
Barby, let’s start with your story. We’d love to hear how you got started and how the journey has been so far.
It was Thanksgiving 2006, and our family gathered at my father’s house for dinner. Each year at dinner we discuss what we are thankful for and decide on a family project that we want to accomplish the following year. This dinner was different; the biggest project was proposed and taken on by the Ingle’s.
They had seen me go from living my dreams as a business owner and head coach cheer/dance at Washington State University to very sick with no medical diagnosis and only getting worse due to the improper medical care I had received from 2002-2005. I became bed-bound, wheelchair bound and disabled, losing everything I had built since graduating college in 1994. The idea was brought up that if I was dealing with these issues and there are millions of others with the same disease that those people would need assistance as well.
Jim Ingle, Jr, Board of Directors and Barby’s older brother, “no one should have to go through what my sister has endured over the past 17 years, especially the first 7”. I was diagnosed finally in 2005 with Reflex Sympathetic Dystrophy (RSD). By January 1, 2007 the family had a plan of action and started the Power of Pain Foundation. Due to our growth and project scopes in 2015 we incorporated in the state of AZ and are doing business as International Pain Foundation (iPain). We applied for and received 501(C) (3) status in March of 2007, and renewed in 2015. In the past 11 years, the foundation has grown to an international charity, based out of San Tan Valley, AZ helping patients and their families learn to overcome the challenges of living with a chronic nerve disease.
After the first year of service in the RSD community, the Ingle family realized that the problem was larger than just this one condition. Chronic pain affects over 37% of the population according to the latest Institute of Medicine report, released in 2011. That’s over 100 million Americans, or 1 in 3 people.
Too many people do not understand the irreversible harm that improper and untimely care has on a chronically ill patient. It is the patients who are experience the negative life changing effects. The issues that are blocking access to proper care range from poor insurance company practices (step therapy, prior authorization, specialty tier) to a lack of education for healthcare providers on pain challenges of the chronically ill.
Despite the high prevalence of pain, access to appropriate and effective pain care remains a barrier for many Americans including people right here in our own community. Patients and their families need to know where they can find resources available in our state. We are empowering the people in pain to overcome the barriers preventing effective pain management with appropriate tools and mentoring. These barriers include limited access to health insurance or choice of physicians, limited access to prescribed pain treatments, limited access to pain specialists who have been appropriately trained in pain management and negative stereotypes about people living in pain. The International Pain Foundation is here to help with all of these challenges.
The International Pain Foundation empowers the pain community to take action to improve their quality of life. The foundation helps identify, prioritize, and drive awareness to key issues, advocate for responsible pain care and collaborate with key decision-makers to find workable solutions. The iPain volunteers for a variety of chronic illnesses, from idiopathic neuropathy, fibromyalgia, reflex sympathetic dystrophy, juvenile diabetes, arthritis, lyme, lupus, multiple sclerosis, spinal cord injuries, cancer pain, mental health issues associated with pain, among many more.
I felt alone and isolated; and I didn’t have the knowledge to get through the medical system on my own. Through all of my surgeries and complications I had hope that I would find relief someday. Healthcare providers across the country now tell me that because of hearing stories like mine, they were able to recognize and diagnose others quicker. This shows me that speaking out has a large impact even if you are only one person.
“As I searched for help, I realized that each time I spoke about what happened to me I was providing hope to others going through similar situations. As a cheerleader who could no longer perform physically I had to redirect my efforts. But before that happened I had to become the chief of staff of my medical team and be my own best advocate. I did this by being responsible for the treatments I chose to undergo. I learned to say no when I needed time to do more research and ask questions. Most of all, I learned that the only way I could be a source of hope for myself and others was to share my story and encourage others to do the same. I began speaking out to anyone who would listen and listening to anyone who would speak out.” Ingle continues, “Putting faces to pain is helpful in reducing the societal stigma of chronic pain. The spotlight on chronic pain through community resources such as local media outlet advances public knowledge and helps society better provide for its pain citizens. With over 100 million Americans in pain we make a difference by sharing our pain stories. We are not alone in the fight against pain.”
Has it been a smooth road?
One of the hardest challenges for our foundation is funding sources. We have a mission to advance access and quality care in order to help people suffering from a variety of inflammatory, neurological, emotional and degenerative conditions that involve chronic pain through education, awareness, and access to care projects. Although pain effects 1 in 3 people it’s often invisible to society and overlooked. People do not understand the unique challenges in the health system we face. Our health-system is designed for acute situations, so when someone becomes disabled by a pain condition, we tend to need more support but society is not willing to actually help with long term solutions yet. Getting the public to understand the challenges and help fund projects that will help access to chronic care is our number one obstacle. There are a lot of good ideas, a lot of people in need, but not a lot of funding for this type of need. We do not have a product or service for the mainstream so it makes raising funds a lot more difficult of a challenge.
So let’s switch gears a bit and go into the International Pain Foundation story. Tell us more about the business.
The International Pain Foundation promotes public and professional awareness of chronic pain conditions, educating those afflicted with the painful diseases, their families, friends and healthcare providers on the disabling pain it causes. We provide action-oriented public education and pain policy improvement. Through projects such as iPainPOP, NERVEmber, Access-To-Care, webinars, iPain Living Magazine, patient mentoring and more we fulfill our mission and make a difference in the lives of chronic pain patients and their families on a daily basis. We received many awards over the years but most recently we were chosen as a finalist for WEGO Health’s Advocacy award; Best Team Performance and a finalist for Best in Show: Twitter.
The iPain provides 4 areas of service. 1) Education; hosting FREE educational events for patients, caregivers & providers. 2) Awareness events for the public 3) Social events for patient to prevent isolation and 4) Cover access to care issues (peer mentors, etc). Our chronic pain awareness campaigns address the global health crisis of pain while shining a light of hope and provide support and community for those that struggle to manage daily. The iPain Foundation team is advocating to make daily living better for those who live in pain. We run online chats, webinars, are a non-profit organization doing many projects that takes activism to new heights because of the assistance from one another. iPain Foundation has become one united voice that is powerful and persuasive in the pain community. We must come together in one motion to make a difference in the lives of those living among us with chronic pain.
The three projects I am most proud to be a part of are NERVEmber, Music Moves Awareness and iPain Living Magazine.
NERVEmber™ is officially used to represent Neuropathy Awareness Month, RSD, Reflex Sympathetic Dystrophy, CRPS, Complex Regional Pain Syndrome, and Diabetes Awareness Month (November) by the International Pain Foundation. The word NERVEmber™ for this purpose was created by Barby Ingle in Oct. 2009. These awareness activities all started as back in 2007 by the International Pain Foundation, a 501(c) (3) charity. As the Neuropathy community and nerve pain awareness movement grew, the awareness activities increased and grew into Nerve Pain Awareness Month or now commonly referred to in the pain community – NERVEmber. The project brings awareness to the 150 plus conditions that have nerve pain as a symptom. The International Pain Foundation host the OFFICIAL NERVEmber project events each year. Since its inception, tens of thousands of nerve pain patients and organizations have signed on to help promote NERVEmber. During the month of November, many people throughout the world come together for the nerve pain community. Events are held. Articles are written. Facebook statuses are updated. Instagram photos are posted. Videos are created and spread online. Proclamations are issued. It is important to remember, that these are all important things that can happen throughout the entire year, not just in November.
For our Music Moves Awareness project we created “HOPE IS TRUE” by iPain, with the assistance of some of the most illustrious talent in today’s music and film industries. Executive Producer and iPain supporter, Ryan Young brought on the help and talent of Emmy nominated songwriter William J. Fuller to write “HOPE IS TRUE” along with highly decorated music producer Alex Geringas to produce the foundation’s song. William J. Fuller is currently featured on a rap in a song with Jesse J. in Ice Age 5 in theaters now, credited under his artist name, Tha Vill. The music video featuring THE SILHOUETTES® and Lynne Waggoner-Patton, was filmed in Arvada, CO, by award winning producer and Director Emileigh Barrett (WhoisEmileigh Productions), whose recent work was selected into the Short Film Corner at this year’s 69th Cannes Film Festival. VFX Producer Tim Ingle’s (Intellectric) work has received Primetime Emmy Awards and has been nominated for BAFTAs, Critics Choice, and Kid’s Choice Awards. “HOPE IS TRUE” officially launch on September 1, 2016, for purchase on iTunes and other music outlets worldwide. The music video is available to watch on iPain’s YouTube channel.
IPain Living Magazine delivers relevant information on chronic pain challenges, tips, tools and resources that puts pain into context in peoples’ lives. Through medical content, insights from experts and real people, and spotlights on topical news, we answer: how it happened, what it feels like, what you can do about it, and why it matters. iPain Living Magazine is produced by editors and journalists dedicated to delivering accurate, trusted, up-to-date chronic pain related information, for consumers. We focus on problem-solving content to help you make decisions during complicated, stressful times. We write in plain English, using real-life examples. Cover stories have included celebrities Ally Hilfiger, Nicole Arbour, Karen Duffy, and Jerry Mathers and is available in print and online versions.
How do you think the industry will change over the next decade?
I see the health related nonprofit industry moving to individual influencers verses organized nonprofits. With ‘big pharma’ in so much trouble over the opioid crisis and marketing their products it will affect the funding sources of all pharma-fed nonprofits. Luckily, we have seen this trend coming over the past few years, with this past year being the year were major lawsuits have come down on the pharmaceutical companies and they are scrambling to limit their damages. In doing so, it is hurting the advocacy groups that rely a majority on that funding to keep fulfilling their missions. This is something we anticipated and had worked to vary our funding sources so that we are never in the position to close down as pharmaceutics close. It does make fundraising that much harder for us all. Most of the patients we work with and help are low income, under-insured or not insured. There is too much work to be done to help the pain patients and being one myself makes it that much more important to me to find ways to be effective in this industry. We have to get creative and funding our efforts is the largest challenges of the entire industry over the next 5 to 10 years.
- Address: 38556 N. Dave Street
San Tan Valley, AZ 85140
- Website: www.internationalpain.org
- Phone: 480-882-1342
- Email: firstname.lastname@example.org
- Instagram: www.instagram.com/internationalpainfoundation
- Facebook: www.facebook.com/iPainFoundation
- Twitter: www.twitter.com/powerofpain
- Other: https://www.youtube.com/c/powerofpainfoundation
Ken Taylor, Dana Gibbons