Tag Archives: Advocate

Fibromyalgia Awareness Day – May 12, 2014

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Fibromyalgia – Make It Visible Photo Credit: National Fibromyalgia Association (NFA)

I am excited! In less than one day, it will be the beginning of a new month and also the time Fibromyalgia patients all over the world will celebrate Fibromyalgia Awareness Day May 12, 2014.

In honor of this auspicious day, we will not only celebrate on the 12th but the celebration will last all month. Please join us and come together to “make it visible” “make fibro visible”.

Share information, pictures, and inspirational stories. Wear purple. Attend empowering events, and make your voice heard on any and all social media platforms. Let your friends know on Twitter, Facebook, BlogHer, and any platform you are visible.

The National Fibromyalgia & Chronic Pain Association (NFMCPA) and National Fibromyalgia Association (NFA) have tons of information available on their website and Facebook page for Fibromyalgia patients as well as family, friends, and all who may be interested in learning more or becoming an active participant. They also have some cool Fibromyalgia apparel you can take advantage of. There are many events scheduled throughout the month of May, too many to list here. Please visit the NFMCPA and NFA website and for more information.

Additionally, I found a cool hashtag the NFA shared on its Facebook page and I would like to share with you in the hopes you share with others when you spread the word to increase awareness. #makefibrovisible

A-Day-Aware-for-homepage-2014Fibromyalgia Awareness Day is May 12, 2014.

Here’s to more pain-free days filled with laughter, joy, and praise!

In the meantime, thanks for stopping by. -JD

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Dear Fibromyalgia Stakeholders: As Promised, a Message from the United States Food and Drug Administration

textgramTo my Fellow Fibromyalgia patients, friends, and loved ones:

I received an email today from the United States Food and Drug Administration (FDA) notifying participants of the full recording that is now available from the meeting held with fibromyalgia patients March 26, 2014. I have provided below the email in its entirety as well as  links the FDA provided for anyone who is interested in what was discussed and for those who missed the meeting, as well as for those who may be interested in submitting comments. Please note the period to submit comments will close May 26, 2014.

As a fibromyalgia patient and advocate for change, I encourage everyone to please take a moment to review the meeting details as well as submit your comments and let your voices may be heard so that you too can make a difference. Your comments and efforts will be greatly appreciated!

Thank you! -JD

A Message from United States Food and Drug Administration

Dear fibromyalgia meeting attendees,

Thank you for attending the public meeting on fibromyalgia patient-focused drug development! FDA collected valuable information on fibromyalgia, the impact it has on patients’ lives, and patients’ perspectives on treatment options. We truly appreciate the courage, effort and time invested from everyone who was able to attend the meeting in person or on the web.

We know that not everyone who wanted to come to this meeting was able to attend. For anyone who missed the meeting or is interested in what was discussed, we have posted a full recording of the meeting on our website: http://www.fda.gov/forindustry/userfees/prescriptiondruguserfee/ucm363203.htm.

In addition to the input we gathered at the March 26 meeting, we encourage fibromyalgia patients, caregivers, and other stakeholders to submit written comments to the online public docket. The comment period closes on May 26, 2014. Submit your comments through this website: http://www.regulations.gov/#!documentDetail;D=FDA-2013-N-1041-0004.

FDA is particularly interested in hearing patients’ perspectives on the questions outlined in the Federal Register Notice that announced this meeting. These questions are pasted below for your reference, and the Federal Register Notice can be found here: https://www.federalregister.gov/articles/2013/09/23/2013-23019/fibromyalgia-public-meeting-on-patient-focused-drug-development.

Again, thank you to everyone who attended the March 26 meeting. If you have any questions, please email PatientFocused@fda.hhs.gov.

Discussion Questions

Topic 1: Disease symptoms and daily impacts that matter most to patients

1) Of all the symptoms that you experience because of your condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include chronic pain, fatigue, difficulty concentrating, sleep disorders, etc.)

2) Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include sleeping through the night, daily hygiene, driving, household chores, etc.)

a) How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days?

3) How have your condition and its symptoms changed over time?

a) Do your symptoms come and go? If so, do you know of anything that makes your symptoms better? Worse?

4) What worries you most about your condition?

Topic 2: Patients’ perspectives on current approaches to treating fibromyalgia

1) What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as exercise.)

a) What specific symptoms do your treatments address?

b) How has your treatment regimen changed over time, and why?

2) How well does your current treatment regimen treat the most significant symptoms of your disease?

a) How well do these treatments improve your ability to do specific activities that are important to you in your daily life?

b) How well have these treatments worked for you as your condition has changed over time?

3) What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, restrictions on driving, etc.)

4) What specific things would you look for in an ideal treatment for your condition?

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I Won’t Give Up…Still Fighting for A Presidential Proclamation naming Every September National Pain Awareness Month!

wpid-storageemulated0DCIMCamera2014-01-25-16.56.44.jpg.jpgLast month I came across a post on Twitter from America Tonight asking the public to submit a request with the number one thing we wanted President Obama to do, noting responses may possibly air on their show the day before the State of the Union Address was scheduled to air.

I reluctantly had my daughter send an email to America Tonight’s Al Jazeera with my answer that stated, “#DearPOTUS, The number one thing I want you to do for all chronic pain sufferers across America is sign the first-ever Presidential proclamation naming every September National Pain Awareness Month, please and thank you Mr President Barack Obama.”

To my surprise I received an email from DearPotus@aljazeera.net saying, “This is great! Could you write that on a poster & take a photo of yourself holding it, so we could use it in our broadcast?” I was elated! I immediately responded asking when was the deadline and advised them I would need time since I had to have my daughter get a poster, write it up, and take a photo of me. They said I had until that following Monday before the SOTU address. So I did just that and submitted the photo. America Tonight immediately posted my picture on Twitter along with several hundred or thousand of entries and then noted “the best would appear in tomorrow’s broadcast.” I was still hopeful.

On Monday, January 27, 2014 I watched the America Tonight show to see if my photo made it to their broadcast but sadly it didn’t. I was still grateful and thankful I got the chance to add my voice even if it was not in the way I had hoped. I truly believe God has a plan and no matter how it may work out according to man, it will work out just as God plan.

I am still hopeful though because it will not stop me from continuing in my fight to secure a Presidential proclamation for a cause I am passionate about. And this is not the first time I’ve been denied. In the past four years I have made several contacts by phone, letters, and other avenues to the President’s office as well as the senator’s office advocating, to no avail. I haven’t received any answers. But I am declaring victory! God is in control. Pain sufferers unite. We will have the victory!

I learned I should take another route so I did a little research and ran across a process I should try out. Contact officials in my state and follow the government chain of command starting with the mayor, governor, and senators. I am hoping this in turn will increase my chance of having someone review and honor my request and ultimately it will become a reality in my life and the life of chronic pain sufferers everywhere, should President Obama review my request and sign the proclamation.

My family has agreed to help with sending requests to the mayor, governor, and senators of my state by mid-March and then will submit a final third written request to President Obama. One day, this too shall pass.

Please keep me in your prayers, join me, and continue in your support to aid in the fight to bring awareness to the “hidden” epidemic of pain by spreading the word. Pain is not just an individual or local problem but a “national healthcare crisis” that deserves proper recognition to increase efforts and aid healthcare professionals to take the right approach towards promoting effective treatment for chronic pain sufferers across the nation.Thank you!

I won’t give up…Still fighting for a Presidential Proclamation naming every September National Pain Awareness Month!

Be blessed!-JD

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