News!

LATEST NEWS IN CLINICAL TRIALS FOR 2016!

NEWS FOR SEVERAL NEW CLINICAL TRIALS SPONSORED BY CURECLICK!

http://curec.lk/1p0LtUT 

Join @CISCRP in DC on 4/20 @ #AWAREforAll. Learn abt research. Free health screenings. Hear from MDs and patients. http://curec.lk/1p0LtUT 

#AWAREforAll #ciscrp #clinicaltrials #cureclick 

 

CLL Leukemia Clinical Trial  

 

Help find next-generation treatments for relapsed #CLL. A new trial is enrolling in your area now. 

http://curec.lk/1SajnnN

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Stay "tuned to much more about the Arthritis Foundation.

Arthritis is a thief. People with arthritis know this full well. It steals everyday joys and long- term dreams. It isolates and ostracizes.
It is painful. It induces a spirit of No.
As people close to the Arthritis Foundation, we know that it doesn’t have to be this way. We are in a unique place of authority and action, with the purpose of finding a cure, but also fighting for the everyday victories.
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 Lupus Awareness Month May 2015 Starts Today! "Get Your Purple On"!

Lupus is one of the cruelest, most mysterious diseases on earth—an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. Research shows lupus is more pervasive and more severe than people think, and has an impact that the public doesn’t realize. You can change that! Help the Lupus Foundation of America raise awareness of lupus and show support for those who suffer from its brutal impact.
Some facts you may not know about lupus...

• ƒ  Lupus is a chronic autoimmune disease that ravages different parts of the body.
  
• ƒ  An estimated 1.5 million Americans and at least 5 million people worldwide have lupus.
  
• ƒ  No two cases of lupus are alike. Common symptoms include joint pain, skin rashes, overwhelming fatigue and fevers that last for days or weeks. Most people with lupus don’t look sick.
  
• ƒ  Lupus can impact any organ or tissue, from the skin or joints to the heart or kidneys. Two leading causes of serious illness and death from lupus are kidney disease and heart disease.
  
• ƒ  Lupus usually develops between ages 15 and 44 and it lasts a lifetime.
  
• ƒ  Lupus can strike anyone, but 90 percent of the people living with lupus are females. Men, children and teenagers
  develop lupus too.
  
• ƒ  While people of all races and ethnicities can develop lupus, lupus occurs two to three times more frequently among African Americans, Asians, Hispanics/Latinos, Pacific Islanders and Native Americans than among Caucasians.
  
• ƒ  While the causes of lupus are unknown, scientists believe hormones, genetics (heredity) and environmental factors are involved—more research is needed to better understand the role of these factors in people with lupus.
  
• ƒ  Lupus can be expensive to live with and treat. The average annual direct and indirect costs incurred by a person with lupus can exceed $21,000 annually, a higher cost per patient than those living with heart disease, bipolar disorder, chronic obstructive pulmonary disease, diabetes, hypertension and asthma.
  
• ƒ  Lupus can be difficult to diagnose. There is NO single blood test to diagnose lupus, and its symptoms mimic those of other diseases, vary in intensity and can come and go over time. More than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.
  
• ƒ  Early diagnosis is crucial to preventing long-term consequences of the disease. If you notice signs or symptoms of lupus, be sure to engage your doctor and ask questions.
  

WAAD15 - "World Autoimmune Arthritis Day! Coming in May - see the Press Release below for more information on the "race"... sounds like it will be a great time and a way to learn so much about autoimmune arthritic illnesses. 


http://www.prweb.com/releases/2015/WAAD/prweb12684750.htm

Here is more information about it on the main Facebook page for WAAD15!

https://www.facebook.com/hashtag/waad15?source=feed_text&story_id=470932676388507https://www.facebook.com/hashtag/waad15?source=feed_text&story_id=470932676388507

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Weather Predictions and Joint Pain

Here is something really awesome from the Arthritis Foundation! I know for myself, I've always said I knew when the weather was going to change, be bad, etc... due to my joints and bones... for many years no one believed that but now it is very true... so here is a "chart" where you can put in your zip code and "see" how much your arthritis may act up... 

  http://www.arthritistoday.org/tools-and-resources/tools/weather/








http://www.arthritis.org/giving-tuesday/

 

 

 

Lots of things going on right now. From Lupus Foundation's Research Awards, to the Arthritis Foundation getting ready for the "Jingle Bell Run/Walk" across the US, and several places in TX. Ft. Worth TX at the main "park" in downtown Ft. Worth will take place on December 6th. If you can be there, that would be awesome. There are also events in Austin, San Antonio, and I believe probably Houston, as far as Texas. We also formally "ended" the "New Ambassadors" for the 2014 year. We had our "year" of training, and now there will be more to follow. Some of us will go onto be "Platinum Ambassadors", some of us anxiously await the 2015 Summit on the Hill, which will take place in March 2015! We will be signing up for that I believe in early January if not before. It will be about the 3rd week of March somewhere around the 26th or so. More details will come and I will certainly keep you posted. My full intentions are to BE THERE!!!! Unless some catastrophe happens, of course with me, you never know I do intend on attending of course. There are many new researchers out there doing some incredible projects when it comes to RA, Lupus, Sjogren's, Raynaud's, Diabetes 2, and so many of the other Autoimmune Illnesses. I also will note there are a couple of new medications out for Multiple Sclerosis, which is fantastic news. Of course we have many decisions to make when it comes to Medicare Supplements, Medicare Advantage Plans, and insurance. This time of the year is already "stressful" enough with the holidays. Then we are bombarded with property taxes, property insurance, car insurance, some of us concerned over income Taxes, then of course the entire ordeal over us with Medicare, or Medicare Advantage Plans. I've had Humana now for about 10 years!!! WOW, my how time has passed.... and when I first took it rather than have my "regular Medicare" and try to find a "supplement", which is almost impossible in TX, if you have Medicare due to "disability" and not due to age. It is total nonsense, but of course they come to realize if you have a "disability" then more than likely your hospital, doctor, medical, and prescription bills could potentially be a great deal higher than those that just turn 65 and get on their Medicare after retirement. I am not so sure that is true, but "we" as the disabled tend to be "younger" and supposedly "longer" lives which means they will be paying out "more" on us, than someone who is already 65 or older. Well, I say a bunch of bunk, because you can be 65 and have as many if not more health issues as us that are "disabled" at 50 etc.... so to "discriminate" against us that are "disabled" is supposed to be AGAINST THE LAW!!! but, I can tell you even now in TX, I CANNOT get a "regular supplemental medicare policy" and if I happen to get one, it would probably cost me 100's of dollars a month to have it. So, you tend to "settle" for what is less, and that shall provide you more ... which is normally a shot in the dark, per se'.   I will be adding more links to the different things going on during the next several months. I've read so many research projects, and I will want to elaborate on many of them.

 

more to come...

 

 

 

 

 

October 12, 2014!!!

 

WORLD ARTHRITIS DAY!!!!

 

http://www.worldarthritisday.org/

 

 

 

Latest News For October 2014! 

Lupus Project Slated for a 5 year run Hopes to Get the Word out to EVERYONE About Lupus!

Hoping to "Fast Track" Treatment Options, Research, Development, New Medications, and Hopefully Bring Autoimmune Illnesses such as Lupus to their "Knees".

 I was so totally bowled over when I read this, I wanted to run outside and shout it to my entire town. Thanks to the NIH, and sponsors such as the Arthritis Foundation  , Rheumatology http://www.rheumatology.org/, 

(other sponsors names in my regular post and more. See My "Blog Post" for more information about sponsors, where you can find more facts, and I hope you are as excited as I am about this incredible news!  Rhia

NIH announces network to accelerate medicines for rheumatoid arthritis and lupus

Partnership includes support from industry and non-profits
The National Institutes of Health has awarded grants to 11 research groups across the United States to establish the Accelerating Medicines Partnership in Rheumatoid Arthritis and Lupus (AMP RA/Lupus) Network. Launched in February of this year, the NIH AMP Program is a public-private partnership developed to transform the current model for identifying and validating the most promising biological targets for the development of new drugs and diagnostics. Through a competitive process, the AMP RA/Lupus Network Leadership Center and Research Sites were selected, and $6 million of first-year funding was awarded on Sept. 24, 2014. The network will implement the goals of the broader AMP RA/Lupus Program.

 

For more information please go to this link:

http://www.niams.nih.gov/Funding/Funded_Research/AMP_RA_Lupus/supplement.asp.

 

 

New News  August 4th 2014   Exciting News for All Wanting to Speak To Your Congress Members! They are "out" for Break and maybe Coming to your Town In August/September !!!

The Congress will be taking their break in August 2014 through mid-September 2014. So, if you have a Rep. or Senator close by or know them, OR if you have something to tell them, discuss, fuss, or whatever, especially about Medicare, our issues with insurance, "Tiered" medications and those ridiculous costs, the three "bills" being now readied to go through Congress, PATA, Increase to Care for Juvenile Arthritic Victims, Increase for Care on this "tiered" business on our prescriptions, having morezc Rheumatologists coming out of medical school to practice. Due to the cost of college etc, versus they are the "least" paid physicians for the most part, we need as a nation to give them incentives to want to be these types of Rheumatologists... "Adult" Rheumatologists do not know all of the special in's and out's of children like the Pediatric doctors do.

We need to make sure their is more funding with the Dept of Defense for arthritis. Thousands, and thousands of our troops come home only to be almost crippled with these horrid illnesses. Helping them through research will also open the doors for help in the entire nation of us suffering. Get the NIH to also fund more when it comes to research, study, and getting down to the reasons why these illnesses are so prevalent, and answer questions that are many.... and many have no clue as to the what, why, how, when, and where.... Autoimmune Arthritis, and other Autoimmune illnesses happen... it is time we find out!

We want and need to build a strong Arthritis Congressional Caucus. And Arthritis needs to be made a national priority. There is NO EXCUSE for not having the funds, the researchers, medications, doctors, and everyone we need to find out the real cause, how to cure it, whether it is contagious... and answer many other things we do not know. I urge you to step in and do your part. Look into the "Arthritis Foundations" web site and see that being an e-rep takes so little time, yet can make a world of difference!

If we do not stand up and voice our opinions, then we are not heard.

"And if WE do NOTHING, then NOTHING gets done"  per Rhia

by the way, I contacted my District Representative Barton, and I already know his schedule for 2 Town Hall Meetings coming up in late August, along with getting a name or two of those in his "group" that are people I need to speak with about these issues. So, see, one email has turned into something possibly to be great!

 

 

 

 

I Wanted to also post here about the upcoming Summit in June. This will be giving me some greater knowledge about Autoimmune Arthritic Illnesses, and knowledge is power! Power over these illnesses for not just myself but for you! See the button to the right. You can click to "Gofundme" and donate to my fund to help me get there. I AM headed for the D.C. "FlyIn" in March!!! I am so excited! One of my dreams has been to go to D.C. stand on the White House Steps and Tell my Story about the realms of just how my life has been "altered" for the worse due to these diseases. Now I continue to have further problems as I have just written an update in my blog. You don't have to give much... but every dollar will put me closer to going to this Summit that can lead myself, and my Foundation I am an active volunteer for closer to the answers of "early detection", Earlier medications", Earlier change for remission, to slow down, or possibly even halt these horrible diseases. Honestly my "daily" life hangs in the balance right now. Please read my last blog post, and if you could see just how badly my "diseases symptoms" have been in the past three weeks, you would certainly understand WHY THIS Summit is so Critical! Wish me luck in Washington at the end of March! Honestly, I am terrified of the flight, and being in a strange new city on my own for 3 days. But, I also find it a challenge in so many great ways to get my story out there. I have already met several of the ladies I will be "meeting" hopefully there. Plus in June, my own Foundation, The International Foundation for Autoimmune Arthritis Plan on being able to have our very first face to face meeting! Right now most of us have only "met" online! So I will get to meet the wonderful lady that began all of this with a "belt" buckle she made at home as a bracelet, went from a "Buckle Me Up" Movement, to the IFAA in three years! Our Patient Centered Research is an innovation in getting these horrid diseases under control! Your help is on foot stronger to get there....

http://funds.gofundme.com/index.php?route=fundmanager

Now I am sure you are wondering what the hell I have put this up for. Unless you've been to my FB page, or have seen the latest "venture" that the IFAA (International Foundation For Autoimmune Arthritis), about now you are scratching your head figuring what else I could possibly have my fingers involved in now.

Well, the story began when I "found" Tiffany the Founder and CEO of what came from a bracelet, made with a bit of leather, a belt buckle, and was a "movement" until now they stand proud and tall as one the instrumental foundations of Patient Centered Research in Autoimmune Arthritic Illnesses. So, what does that mean to me, and then of course what does that mean to yourself? That is a very long answer that shall become clarified in the days to come, and in my book to come also. A portion of my book, will be about my relatively "short time" I've been with a Foundation, that I have watched make almost impossible changes in the way others, including doctors, researchers, patients, and people from around the globe sit up, take notice, and SEE the REAL issues that "we" the patients deal with daily.

None of our lives are "daily".... or the events in them are not for sure. We may get up in the morning, much more slowly than anyone else, "walk" some of the stiffness out. Next may come a cup of coffee, that it takes all of your energy in both hands to pour it in a cup. I've not truly been able to get a "grip" on the entire next few months coming up and all that is involved, until last night. 

After I have spent the last 6 days at least arguing over insurance, my biologic medication, the infusion center, driving my doctors office crazy, along with myself, it hit me square in the face, that in 6 WEEKS I will be going to Washington DC! Here I have been wanting to do this all my life. It has been a dream, for me to stand in front of the White House, hopefully not speaking to just myself, but someone even if people just coming to be those to take a look at the White House and happen to "hear" my story. So long, I've thought about what I would say, how I would say it, and what I would want to get across to the officials in those buildings. It is almost like trying to reach the "Pope" or a movie star, or anyone that is in any type of place of "authority". Your chances of really getting to even shake their hand might be slim to none. Much less get their attention long enough to gripe about your illness, what the government is NOT doing to help it, and what they are DOING WRONG to make it worse! My thought has been unless you have lots of money to "slide" under the door of any one of our local, state or federal officials, you might as well, jump in the back of a truck, while it goes 30 miles an hour, down a dirt road and spit... And when the spit lands back on you mixed with dirt... that is just about how much you would get while the officials in Congress scrape you off of them like they scrape mud off their shoes. 

Please go back to my "blog" itself to read the rest of this post :).....     http://www.autoimmunearthriticsystemiclife.com/2014/02/trying-to-absorb-everything-that-seems.html

February 14th, 2014Here is another HUGE piece of News From the IFAA! We are now headed for the true meaning of "Patient Centered Research"

Please take a moment and read just how this study could bring a whole new Light to the World Autoimmune Arthritic Illnesses!

The International Foundation for Autoimmune Arthritis (IFAA) is announcing the launch of the “Early Symptoms of Autoimmune Arthritis Study”, a patient-centered research project that, when finished, we believe will help to combat the delay in diagnosis that is often associated with the adult onset Autoimmune Arthritis diseases including Rheumatoid Arthritis, Systemic Lupus Erythematosus, Psoriatic Arthritis, Still’s Disease, Ankylosing Spondylitis, & Primary Sjogren’s Syndrome. While IFAA has a team of patients who are also experienced in research to lead this study, our Scientific Advisory Panel will be reviewing this effort to ensure all findings and summaries are analyzed and published in a way that will be well-received by the practitioner and scientific community. IFAA has also contracted Floyd J. Fowler, Jr., author of Survey Research Methods and senior member of the Center for Survey Research in Boston, Massachusetts, to mentor the IFAA team and professionally review all materials prior to distribution and publication.

In addition to our internal team, IFAA is proud to announce our official Nonprofit Expert Supporters in this study, enlisted to review the study and our findings. This team includes the Spondylitis Association of America to review items related to Ankylosing Spondylitis & Psoriatic Arthritis, the International Still’s Disease Foundation to review Still’s Disease, the Sjogren’s Syndrome Foundation to review Primary Sjogren’s, & Lupus UK to review Systemic Lupus Erythematosus. IFAA will be reviewing Rheumatoid Arthritis. This project was made possible through the support of Janssen Global, Inc.

About the Study.
IFAA will create a well-rounded Early Symptom model for the primary Autoimmune Arthritis diseases through data collection that analyzes the early signs of these diseases, as reported by the patient. Currently the information published, even by the most credible of sources (ACR, NIH, & Medscape) is inconsistent; no two lists of early symptoms for any of our diseases is the same. So how could patients, let alone doctors, truly understand what to look for if even the most credible published information is conflicting? Secondly, the information is a collection of data submitted by doctors and researchers, who can only acknowledge what they witness as first symptoms, or what they view in a lab. Could the missing link in early detection be the testimony of the patient? Will this study be the first step in unifying a basic understanding of these diseases early on so that detection is accelerated, thus promoting earlier referrals, diagnosis and treatment? IFAA thinks so. In saying this, once we have completed this "Phase One" of the study, which will be distributed in the US only, we should obtain enough information to begin developing educational materials on early detection for this group of diseases, which in time would then be distributed to primary care physicians, ER staff, and rheumatologists nationwide, then globally. While that educational development is in process, IFAA will be taking this same study international, debunking any theory that health care systems may be to blame for delay in detection.

In addition to the main focus of this study, as outlined above, there is also a secondary outcome we will be recording, and possibly using for a branch off study, revolving around "undifferentiated" diagnosis. Presently the standard treatment for "undifferentiated" disease, or when the symptoms are too broad or underdeveloped to warrant a true diagnosis, is to wait out the disease progression and not to treat with disease modifying medications. Also "current", and yes, we use that word loosely, statistics suggest that only a minor percentage of patients get this diagnosis and a large number of those patients are 'fine' never being treated, as their condition never worsens. This information is GROSSLY outdated, as the Co-Founders and 1,000's in our community now have permanent, irreversible damage due to an initial "undifferentiated" diagnosis and failure to treat during the ACR's "window of opportunity" recommendations. As leaders in our community we MUST put a stop to this injustice. No person should be forced to live a life of disability because their disease is manifesting slower than others or because their early symptoms are not associated with current detection standards. If all of these diseases use the same medications, why should it matter which one it turns out to be to start a treatment plan? The current AVERAGE time for diagnosis is 1-3 PLUS years, but the "plus years" is often 5, 7, even 10 or more. Given that 50% of all patients can experience complete disability 10 years after ONSET if not treated properly, this means if a delay in diagnosis is 3 years, the patient is almost 1/3 of the way to disability before ever starting.

The survey will be ready for distribution in late March 2014, which is also Autoimmune Disease Awareness Month. Results will be revealed LIVE during World Autoimmune Arthritis Day in May.

There are plans for a Phase Two of this project, which includes production of new educational materials by the “team” of nonprofits participating in this study and a re-launch of this survey on a global level.

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As promised I am "ADDING" THE VERY FIRST "LATEST NEWS INFORMATION FOR YOU! THE INTERNATIONAL FOUNDATION FOR AUTOIMMUNE ARTHRITIS HAS MADE 2014 THE YEAR OF THE PATIENT!
WE WANT TO GIVE YOU - THE EMPOWERMENT YOU WANT & DESERVE AS A PATIENT! SO I AM GOING TO ADD INFORMATION BELOW THE GRAPHIC. AFTER ALL OF OUR "PATIENT-CENTERED" ADVOCACY, VOLUNTEER WORK AND HEALTH ACTIVISTS WITHIN THESE REALMS, YOU CAN BE YOUR OWN "SELF CENTERED HEALTH ACTIVIST FOR YOU OR SOMEONE YOU KNOW!

WAAD14 "A Day In The of A Patient"

IFAA -Empower the Patient 2014

***Latest News on the RA Front!  1/11/2014***

Just another sign that "EARLY" diagnosis and "EARLY Treatment is the best for Patient, Doctor, and in a Financial Realm!!


When I say financial realm I am also speaking of for the "patient" also. I am sure many of you, like myself, have been "bombarded" and "overwhelmed" by the expense of some of our latest "biologics" cost. And then trying to get insurance to pay for them, is like getting through a brick wall!! How does any of these pharmaceutical companies, pharmacies and insurance companies consider the fact us that are just everyday people, are NOT RICH!!! There is NO WAY the majority of us can afford even a $2,000.00 or MORE "co-payment"! And I am not sure about all of you, BUT in my own battle to get my latest "infusion" therapy PAID for as the insurance initially "VERIFIED" through the facility and through myself, now they are insisting it was "coded" incorrectly, thus that are asking me to pay a co-insurance of like $3,000.00!!!! WHAT! They say they will pay, and then there is always some excuse to try and pawn it off on us.... so this article fits in with many of the aspects of getting earlier diagnosis, aggressive treatment, less damage... and a better quality of life!

http://www.internalmedicinenews.com/index.php?id=514&tx_ttnews%5Btt_news%5D=229977&cHash=046c7f99f382aefc26eb04b13f8f5c7

More to come on all fronts!
(COMING SOON!)

This is one of my latest informational pages I want to bring to my blog, and to you, my readers. We, are bombarded with such a wide array of NEWS, about everything! 

But, when it comes to the "latest" in the center of health issues; such as Autoimmune Arthritic Illnesses, those are the stories that we tend to be pulled to. Whether it is about the illnesses themselves, new research, something brand new on the home front of medications, tests, lab work, our doctors, and the list continues, then we gravitate to those stories.

We also find interest in other realms of news, when it comes to health. It might be other illnesses, and their news. It can also be any type of "legislation", changes in laws State or Federally, health insurance, pharmacies, and the entire gamut of other ideas and happenings that truly effect us in every walk of life. 

So, I will be posting stories from places such as the "Lupus Research Institute, NIH, Johns Hopkins, Mayo Clinic, FDA, the Pharmaceutical Industry, plus many others that may serve to give you places you can find information of the latest on all types of health issues.

I am sure I will find PLENTY to post in this section. :) As of late, there has been no lacking all kinds of wonderful and hopeful news, along with some very distressing news on the health front. \

I will begin all of this starting tomorrow!  :)

Please visit frequently!!!!! and for gosh sakes PLEASE COMMENT!!!! :)