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Take Control of Your Pain: Palm Springs

When: Thursday, February 18, 2016
Time: 1-6 PM
Where: Renaissance Palm Springs Hotel
  Palm Springs, CA

FREE to attend!


What A Journey 5 Years Has Been

On January 11, 2011, U.S. Pain Foundation went national. The fast growth of the organization exceeded all expectations. 

Now considered the leading pain organization and the largest, most influential patient-advocacy group in the country,  U.S. Pain is proud to announce the following:

  • We have a total of 300 ambassadors
     with an additional 450 individuals who signed on for advocacy at the end of the year. 
  • We currently have 70, 345 members. 
  • In 2015, we had 32 Pain Awareness Month Proclamations. 
  • In addition, we have had 100's of events put on from health fairs to educational events. 
  • 2016 will bring two new  INvisible Project editions. 
  • In 2016, we will be launching the International Pain Organization to unite individuals in chronic pain from all over the world.

January 5, 2016
Happy New Year!
January 2016
Dear Members and Fellow Pain Warriors,

We are proud to welcome you into the year 2016 with health and happiness. We have so many exciting announcements and new programs to unveil this year, that we cannot wait for the year to get going.

We are also very proud of our past year, and all that we were able to accomplish, with the help of all of you. Together, we can continue working toward bringing a voice to pain patients and helping all pain warriors live a happy, fulfilling life.

We would also like to thank you for being part of our national journey over the past five years, we look forward to continuing our work in the future and are so grateful to all the amazing pain warriors we have had the honor of meeting and working with. 

Wishing you low-pain and high-spirits,
Paul Gileno, Founder and President

 This is My Pledge to You

Being the Founder and President of U.S. Pain Foundation is a privilege and honor. I take the role very seriously, as I know living life with pain is a serious matter. As a person with pain, I understand the challenges we face on a daily basis. This is why my attention remains focused on making sure we are empowered and educated through the pain journey. U.S. Pain was created because those with pain, like myself, needed an organization that supported them along their journey. I see every person who joins our E-Newsletter list, becomes an ambassador or member of our online support community as family. We are a unit that together is able to accomplish a lot of positive change for the pain community.
 
When I started this foundation five years ago, there were hundreds of members. Now, we are considered the largest, leading patient-advocacy organization in the US and the largest pain organization. I am committed to keeping the integrity and vision at the forefront of every decision I make. U.S. Pain Foundation is not about me: it is about all of us. 
 
That means I will never sell out. The programs, initiatives and campaigns we craft exist because they offer those with pain help, support, empowerment, community and a voice. The pain warrior - you and me ... and the millions of others like us nationwide - will always be the priority. We are unified as one.
 
Not once has the creation of this foundation been about boosting my ego, finding public notoriety or obtaining fame. I am here to serve you. I will never jeopardize our mission or passion to gain five minutes of fame for myself. The work of U.S. Pain Foundation is 100% genuine. There are no strings attached or ulterior motives. All that I care about is further enhancing the lives of people suffering with pain, and we will continue to do so in a discreet and powerful manner.
 
If we are going to be taken seriously to make change in our lives, we need to be serious. I take advocacy work seriously. I take validating our stories seriously. I speak for people with pain because I am a person with pain. Furthermore, I see each person as part of the greater picture. We are all equals in this journey.
 
My pledge to you is this: I will never seek five minutes of fame and claim I am doing it to raise awareness. I will always be mindful of your story because it matters most. I will fight each day for people with pain to become educated, empowered and advocated for. I will always be a professional and work hard to make you proud.
 
Wishing you a low-pain and high-spirits day,
Paul Gileno

 
2016: A Year of Positive Growth and Unity Within the Pain Community
 
There are so many positive occurrences within the advocacy arena that we are excited to be spearheading!

With U.S. Pain being the nation's largest and most influential pain patient advocacy group, millions of pain warriors are focusing their attention towards our successful and ever-expanding patient advocacy program. 2016 will be a progressive year. We are predicting an incredible movement within the pain community to unify our voices and take a stand against chronic pain stigmas.

We now have a person dedicated fulltime towards all state advocacy efforts. Creating this role allows the organization to focus its energies on state-driven policies which may impact fair access to legitimate pain patients, among other issues. At the state and federal level, U.S. Pain will continue to participate in the passage of bills which protect the basic rights of those riddled with a rare condition, a debilitating injury, an incurable disease and chronic pain.

Our Advocacy Team will look at a number of topics this year which has a direct impact to the overall treatment plan of a pain warrior. These high priority issues includes step therapy (also known as fail first), complementary therapy options, non-medical switching, integrative therapy, medical marijuana, abuse-deterrent formulations, biosimilar medications, prior authorization and medical synchronization, to name a handful. The Advocacy Team tracks these high priority issues with the hope that one day all pain warriors can live their lives with one less hurdle, one less roadblock when it comes to accessing the treatment they deserve and need in a timely and effective manner.

Founder and President Paul Gileno recognized that there was a significant need to provide support for those living with chronic pain. His vision began with an idea, a local support group. Within five years, that dream has grown into this successful, national nonprofit organization with a strong presence at state Capitol buildings, in Washington D.C. and within local communities.

That vision to empower the pain patient, to provide support for caregivers and to educate not just family members, but healthcare providers as to the challenges faced by a pain survivor, has spread past the United States. The organization's mission has been and continues to inspire pain patients to become involved and share their voice. U.S. Pain fights tirelessly and vigorously for fair treatment and access to a number of treatment modalities. The number of Pain Advocates has and will continue to grow this year.

What is in store for 2016?
U.S. Pain is thrilled to see this increasing trend of interested volunteers who wish to learn ways they can advocate within their own state. The Advocacy Team is gearing up for this movement of unifying all diseases, all forms of chronic pain from each state and will be taking a number of steps to prepare and engage new advocates.

Following the closing of U.S. Pain's recent Advocacy Survey, a tool which will be helpful in better prioritizing our efforts within certain states and our offerings of new educational opportunities for interested U.S. Pain Patient Advocates, we had 755 surveys filled out, 494 individuals of which expressed an interest in joining the organization's Advocacy Network immediately. Everyone who filled out the survey wanted to learn more about joining the advocacy program. This is an incredibleamount of potential new volunteers to add to our already stellar group of dedicated Pain Warriors!

To prepare for this influx of Pain Advocates, the organization will redesign its Pain Ambassador program into tiers:
  • Pain Ambassadors
  • Pain Advocates 
  • State Leaders 
U.S. Pain is also planning its annual Patient Advocacy Summit to allow for new and existing Pain Warriors the chance to hone in on their craft to make positive change for the pain community. They will be given tools as to how they can share their pain journey before lawmakers and the media, in addition to determining ways to track issues within their own state and how to become involved with proposed legislation.

Finally, U.S. Pain's state advocacy efforts are further advancing by pairing up with like-minded groups to form alliances that will no doubt become driving forces behind legislation the organization supports or opposes. 
 
U.S. Pain team members sit on several committees or coalitions such as:
Alliance for Balanced Pain Management Steering Committee
AfBPM's Working Groups
Consumer Pain Advocacy Task Force (CPATF)
New York Step Therapy Initiative Group
Ohio Access to Medications Alliance
Kentucky Cap the Copay
Georgia Biosimilar Coalition
Kentucky Access to Medications Alliance
Specialty Tiers Coalition of Georgia
Pennsylvania Coalition Against Specialty Tiers
Patient Access for Florida
Indiana Patient access Coalition
Illinois Switching Coalition
MA Patients for Prescription Access Coalition
New Jersey Out-of-Pocket related coalition (not yet named)
Alliance for Patient Access Pain Therapy Access Physicians Working Group
National Council on Patient Information and Education (NCPIE)
Lupus and Allied Diseases Association-Modern Consensus Team (The Ethics of Step Therapy and Autoimmune Disease)

U.S. Pain Foundation also works and will continue to work with nonprofit organizations which have shared the same mission in providing pain patients with a brighter future. We are grateful for these partnerships to further guarantee pain warriors basic patient rights and fair access to various modalities (complementary, medicinal, alternative, and integrative).

You can see by this snapshot of existing efforts and the implementation of additional strategies, U.S. Pain will be heavily engaged with state affairs as it relates to Pain Warriors. We are ready to be that platform for advocates to learn and grow. We are eager to unify each chronic pain stricken state for the betterment of the pain community. To join our advocacy team, email:  shaina@uspainfoundation.org
U.S. Pain Foundation | uspainfoundation@gmail.com | http://www.uspainfoundation.org
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