Tag Archives: advocacy

Fibromyalgia Patients and Pain Warriors, Save the Dates 3/9/14, 3/26/14, 5/12/14!

Save the Dates!To all Fibromyalgia patients, pain warriors, caregivers, advocates, and family and friends of chronic pain sufferers across the nation, please save the dates for two important events that will occur in March and one in May 2014:

  • The U.S. Pain Foundation is hosting Take Control of Your Pain Education Seminar for chronic pain sufferers in Phoenix, Arizona March 9, 2014.
  • The United States Federal Drug Administration (FDA) is holding the Fibromyalgia Patient-Focused Drug Development Public meeting and is inviting patients to attend the meeting in person or via webcast as well as the opportunity to submit comments via online. Registration to attend the meeting will close on and must be received by March 20, 2014. You can visit Eventbrite at https://marchfibromyalgia.eventbrite.com for registration and meeting details. To submit comments, please visit http://www.regulations.gov/#!documentDetail;D=FDA-2013-N-1041-0004 , go to the Open Docket Folder and click on the blue “Comment Now!” button. The deadline to submit comments is May 26, 2014.
  • Fibromyalgia Awareness Day is May 12, 2014.

I am also happy to announce, with the help of family members, I will be participating and will be in attendance for the FDA Public Meeting via webcast 3/26/14. I registered 10/31/13 with the National Fibromyalgia & Chronic Pain Association (NFMCPA) via Eventbrite for the public meeting that was initially scheduled to occur on December 10, 2013. The meeting was canceled the same day due to inclement weather conditions closing the federal government office in the Washington, D.C. area but has been rescheduled. I am excited!

I am in the process of having my family help complete the topic questions with my comments to submit to the docket. While I will not have direct access to be a part of the patient panel because it will be made up of patients attending the meeting in person, I will have the opportunity to contribute to the discussion and possibly submit comments in real time during the meeting. It is my greatest hope that the comments I submit are reviewed during the meeting and in some way will contribute to change for Fibromyalgia patients and chronic pain sufferers across America. Please keep me in your prayers.

I urge you to please be a part of the FDA event and I strongly recommend you tell a friend or family member of the meeting as well as share with them the opportunity to submit comments even if they are not able to attend. Every voice helps and needs to be heard.

I believe this is a great opportunity to express to the FDA how fibromyalgia impact the lives of those living with it and what we as patients believe should be considered through our participation and submission of our  comments to the very agency that regulate and approves of medications developed for Fibromyalgia. This in turn may increase continuity of care efforts and may help to determine the right approach to effective treatment.

It is also a chance in a lifetime for our voices to be heard on a federal level and will give us an opportunity to share our perspective in agreement with what the FDA notes that will allow us “to provide input on symptoms that matter most to patients and on current approaches to treating Fibromyalgia. The FDA is interested in obtaining a better understanding of fibromyalgia patients’ perspective on the severity of the disease and the available therapies used to treat fibromyalgia and its symptoms.”

As for the U.S. Pain Foundation seminar, unfortunately I will not be able to attend because I will be out of town visiting my mother. I’m saddened by this because it would have been my very first opportunity to be a part of an event with the organization as a pain advocate. As well as show off the pain warrior bracelet I received when I joined last year to advocate for pain sufferers.

While I may not be able to attend the local event, I do feel it is important for others to be in attendance so if you live in the Phoenix area, please visit the U.S. Pain website to register at http://events.r20.constantcontact.com/register/event?llr=c9z5umdab&oeidk=a07e8szc4tp3e25f308.

Although my advocacy efforts are minimal, I take great delight in being able to advocate and contribute no matter what capacity it is in, therefore, it is with sincere efforts that I encourage you to save the dates, March 9, 2014, March 26, 2014, and May 12, 2014 to afford you and others the opportunity to participate in each upcoming event.

Thank you for staying with me on this journey!

-JD

2 Comments

Filed under My Thoughts, Personal, Uncategorized

In Support of September Pain Awareness Month

In support of a cause I am truly passionate about for those who suffer with ongoing chronic pain, as a pain advocate, I decided to dedicate this post today to lend my voice in honor of September Pain Awareness Month.

Having lived with chronic pain for the past eleven years and being diagnosed with various conditions, I became an  advocate with various chronic pain association organizations to help raise awareness. Although my efforts are limited due to limitations and challenges I face, I do what I can when I can to make a difference.

When I became diagnosed with Fibromyalgia in 2009, with the help of my family,  the first step in my journey  as a pain advocate began with submission of my story “Joy” to the APF Action Network. The story can also be read at http://action.painfoundation.org/site/PageNavigator/Voices_of_Pain.

To raise awareness about the need for effective pain care in response to the American Pain Foundation’s  (APF) “If I Lived in a World with Less Pain, I Could…” campaign to SECURE A FIRST-EVER PRESIDENTIAL PROCLAMATION OFFICIALLY NAMING EVERY SEPTEMBER NATIONAL PAIN AWARENESS MONTH, my family helped create this video “If I Lived in a World with Less Pain, I Could…” to share my voice as well as spread the word to bring awareness to what I believe is such an important issue in the lives of those who live with pain.

The video represents a poem of my message to PRESIDENT OBAMA of what MY WORLD WITH LESS PAIN would be like. It gives me an opportunity to make a difference in the lives of others as I work to bring national awareness to the “hidden” epidemic of pain (APF) so that those who suffer with pain will have a right to effective care and treatment; because “pain” is not just an individual or local problem. It is a national healthcare crisis. It does not only affect pain sufferers but it affects families, friends, associates and anyone who is connected to its world. Even though it may not directly affect every individual, the physical, financial and emotional affects can be devastating to the pain sufferer and the families of those who will ultimately suffer. But with your help, we all can make a difference.

APF ceased operation last year and is no longer active, but I am still campaigning and fighting for a presidential proclamation.

Please join me in support of this cause and spread the word DURING THE MONTH OF SEPTEMBER or UNTIL A PRESIDENTIAL PROCLAMATION IS SECURED by asking others to spread the word on Twitter, Facebook, Tumblr, or any other social media. Your support would be greatly appreciated! -JD

7 Comments

Filed under My Thoughts, Personal, Uncategorized