Lupus Foundation of America's Advocacy Day 2011!

The Lupus Foundation of America's Advocacy Day is an annual event where lupus advocates come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support more funding for lupus research. (source: www.lupus.org) Register Today MAKE YOUR VOICE HEARD ON CAPITOL HILL The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with the offices of their U.S. Senators and Representatives to educate policy makers about lupus and discus public policies that have an impact on people with lupus. DAY ONE Training – The first day is devoted to training for the advocates. Each participant receives an orientation on basic advocacy principles as well as a thorough review of the LFA’s current legislative priorities. The training also includes panel discussions featuring distinguished lupus clinicians and researchers and notable government officials. DAY TWO Meetings with Elected Officials – On the second day advocates go to Capitol Hill to meet with Members of Congress and their staff to discuss legislative issues and urge Congress to provide more funds for lupus research and education programs. A highlight of the day is the Annual Capitol Hill Luncheon, featuring prominent Members of Congress. LFA’s 2011 Advocacy Day Program will be held February 28-March 1, 2011 Capitol Hilton 1001 16th Street Northwest Washington, DC 20036 *Room Block Reserved until February 7, 2011 Room Rate $249/night (plus taxes) Hotel Reservation Information Group Code: Lup Phone: 202-393-1000 Code: Lupus Advocacy Day Click below for the Program Guide & Frequently Asked Questions

Mario Party ANS - Limited Edition! Get yours while you can!

Mario Party ANS (Autonomic Nervous System!)- Limited Edition

Let's jump right into it and indulge in some mindless fun, but not so mindless today as you learn about Dysautonomia through--> Mario Party ANS (Autonomic nervous system)- limited edition video game for Nintendo 64! so let's start the party off right! Pop in the Mario Party ANS-Limited Edition game and learn about dysutonomia! First, you are probably wondering what the Hell dsyautonomia is? So I'd like to start by offering you a simple definition:

Dysautonomia is a general term used to describe a breakdown, or failure of the autonomic nervous system. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness and cognitive impairment.

Autonomic dysfunction can occur as a secondary condition of another disease process, like diabetes, or as a primary disorder where the autonomic nervous system is the only system impacted. These conditions are often misdiagnosed.

www.ndrf.org)

Now that you have a definition, here are the objectives of our game! Select your character (I'm always Yoshi so hands off!-- Dibs on

him!) And we can get the game rolling! Basically you are playing on a giant board game, the path navigates you around the Autonomic Nervous System, and your goal is to help regulate the dysfunctional aspects of the ANS! Each player rolls a dice, moves the appropriate number of spaces and then after each player gets a turn, its time for (drum roll please) Battle mini games, and a chance to win coins so that you can buy your sodium filled and electrolyte packed beverages as well as your prescriptions so you can control the dysautonomia best you can and win the game!) After 20 turns, the winner of the game will be the player that has not only the most coins but the most powerade beverages (sodium filled drinks increase blood volume which helps prevent hypotension which is why most people with dysautonomia have a syncopy (or fainting spells!) But if you get low on coins and cannot save up enough to buy your sodium packed beverages and medications, you will experience a laundry list of dysautonomic symptoms that include:

The autonomic nervous system controls the “unconscious” bodily functions, such as heart rate, digestion, and breathing patterns. It consists of two parts: the sympathetic system and the parasympathetic system. The sympathetic system can best be thought of as controlling the “fight or flight” reactions of the body, producing the rapid heart rates, increased breathing, and increased blood flow to the muscles that are to escape danger or cope with stress. The parasympathetic system controls the “quiet” body functions, such as the digestive system. So: the sympathetic system gets us ready for action, while the parasympathetic system gets us ready for rest. Normally, the parasympathetic and sympathetic components of the autonomic nervous systems are in perfect balance, from moment to moment, depending on the body’s instantaneous needs.

In people suffering from dysautonomia, the autonomic nervous system loses that balance, and at various times

the parasympathetic or sympathetic systems inappropriately predominate. Symptoms can include frequent vague but disturbing aches and pains, faintness (or even actual fainting spells), fatigue and inertia, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms such as irritable bowel syndrome, sweating, dizziness, blurred vision, numbness and tingling, and -- quite understandably -- anxiety and depression.

So if you'd like to try your hand to avoid this, I suggest you do your best and put your best foot forward in our

mini games to win those coins! But beware because the evil Bowser can cast an "episode" of these symptoms upon you at any time! That's right! Even when it is being well controlled, BAM! out of nowhere!-- A slew of symptoms can attack! Are you ready to play?

Mini games that you'll get a chance to try your luck at include (but are not limited to...)

Raking in the sodium!- each player controls their own crane type rake, and the goal is to rake in as many sodium tablets as you can! The gold ones are worth 5x as much and will give that blood volume a good boost to help that hypotensive state!

ANS Control switcheroo!- This game puts one player against the other three, as the one that is flying solo is in charge of the switch that controls the balance between the ANS two components- the parasympathetic and the sympathetic nervous system! His goal is to get the other three plays to become unbalanced and cause an episode of symptoms, while the other three players must work hard to stay up and keep their ANS functioning as normal as possible!

Try your luck- chance boxes!- That's right! Your a contestant on Toad's Chance box so come on down! Take

your chance- you have 5 tries to land on a Gold heart that will control your ANS for 5 turns during the game, an item any player with dysautonomia would be envious of! If you do not win the gold heart, you can still walk away with an item that could help you down the road, such as a powerade, or a blood pressure cuff, and compression stockings to help when your blood pressure dips!

These are just a few of the many mini games we have for you to test your luck at, and should I say gaming skills! So be sure to stop by your local gaming joint and pick up your limited edition copy of Mario Party ANS-limited edition!

Jolt-of-Java: "By desiring little, a poor man makes himself rich"- Democrtitus

Featured Lupus Advocate: Singer/Song writer: Elisa Lynee

Good Evening to all my spoonies- I hope you are all staying warm this evening in this brutal cold blast we are having (unless of course you're one of our readers from the land down under or the southern hemisphere- and are enjoying summer!) I met this woman a bit ago- via networking connections, she has an incredible story- and is doing big things to raise Lupus awareness, So without further Adieu- I'd like to introduce you to a woman who needs no introduction:

Elisa Lynee:

Elisa Lynee is an accomplished singer and ASCAP songwriter. Her songs range in style from pop-country crossover to pop-rock. Her lyrics and vocals are expressive, heartfelt and emotional. But In addition to this- Elisa has Lupus and has taken her talents and musical gift to new heights with her Song "Fly Free Butterfly Fly Free" A song written from the heart- that depicts her battle and represents the emotions that one carries as they battle Lupus each and every day. All of the profits from this song are donated to the Lupus Foundation of New England (her local chapter!). I encourage you to download her song from itunes- you will be moved, as I was upon listening, not just because of the angelic voice she offers, but also because her lyrics (listen to them closely- they are truly inspiring) are so relatable and heart felt.

Check out her site here-You can sample her music here as well!

And Download "Fly Free Butterfly Fly Free" from itunes here! Simply CLICK HERE! follow the link and make your donation with the simple purchase of her song to The Lupus Foundation of New England!

Again - I strongly encourage you to listen and download this song- to support both our fellow lupus sister Elisa Lynee and Lupus awareness. And on that note- I hope you are all headed over to her site to take a listen!

Jolt-of-Java: "Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.- Harriet Tubman

I've got A Purple Ticket!

A Tour of the CHRONICLYsILLy Candy Factory!

Good morning and I hope everyone is staying toasty in the Northeast as we got some more snow overnight! I'm bundled up as I'm up early this morning-and so looking forward to my morning cup-O-joe! With graduate school starting back up and a lot of recent work being put into the site to revamp it for the New Year- I've been working hard to bring you the best of the best in the chronic illness/lupus communities while creating a place for everyone to come share, learn and grab a good laugh or two! So this week to bring our Friday in, in a fun and festively sweet treats way- and in honor of our new Sweet Treats Confections collection at CHRONICLYsILLyDesigns© - I'd like to round out our week and end on a sweet note, so today, a select few (yes, that means you!) have been selected to get a private tour of the CHRONICLYsILLy Candy Factory, ( no one has ever been granted access before, but for the sake of the cause, this will surely bring Lupus and Autoimmune diseases into the eye of the public as people from all ends of the globe try to be in the select few by finding a purple ticket in their CHRONICLYsILLy candy bar! (sound familiar? It should!)

Located on the elusive islands of "Lupie-Land" (coincidently, also where our favorite Theme park, Lupie-Land is located) This factory has managed to stay out of the public's eye for many years, however, times have changed and it is time to raise awareness, and what better way to do this, then draw major public attention to a Factory designed and geared towards those with Chronic Illnesses and Autoimmune diseases!... A short car ride, two planes and a ferry later, we are arriving at the gates of the CHRONICLYsILLy Candy Factory! BUT! Before we begin, you must promise never to reveal what lies behind these doors to ANYONE! We cannot jeopardize the safety and security of the factory and all of the mysterious secrets that it holds.

Now, that we have that all sorted out, I'd like to warmly welcome you to the CHRONICLYsILLy Candy Factory! What was that you say? Oh never mind we don't have time, we have so much time and so little to do, wait. Strike that. Reverse it! Our tour will begin today in the experimental room of our factory, here we are working on new state of the art products that are unlike any other candy out there, they could change the way the world views candy, once we work all the kinks out of course! I bet your wondering what kind of products could possibly be so double top secret? Well allow me to share a select few that we are currently working on:

We have the Never ending everlasting Pain Killer (similar to that of a standard gobstopper) With delicious flavors in ever layer, this never ending pain killer will keep even your worst pains at bay, what's the best part? Not only does it taste scrumdidliumptious, but one is enough for anyone, because it is truly everlasting!

Next we have our latest in Gum chewing technology...A time released stick of gum that allows you to get all of your daily doses of medication at the right time of day, however, currently there are still some minor issues with it...I wonder if that Droopy Lupie ever got his vision back...well anyways moving on...

AH HA!! Our Lupie-Berry Bar!- One of my personal favorites that's in the works, a deliciously coated dark chocolate candy bar, with Lupie-Berry Jam inside each bite! What's so special about that? Well, the Lupie-berry has a unique genetic makeup, and has a special component that keeps even the worst prednisone hunger pains at bay! Keeping weight off while

on Prednisone has never been this easy! What did you say? What is a Lupie-Berry? Oh how silly of me, well we grow them here in the factory in the Lupie-Berry fields, they are native to Lupie-Land and basically blueberries taste like lupie berries and lupie berries taste like blueberries! (I hope that cleared it up!)

What was that... Who works in the factories? Oh of course how silly of me, well the Droopy Lupies of Course! Why here they come now!

"Droopy Lupie doopadee do,

I've got a perfect puzzle for you!

Droopie Lupie doopadee dee,

If you are wise you'll listen to me!

What do you get when your immune system stinks?

and your head is too foggy to think?

What can you do when your joints really ache?

and you've run out of pain killers to take!

I don't like the sound of that!

Droopy Lupie doopadee dee,

I want to have some more energy!

Droopy Lupie doopadee doo,

It's time for our nap, do you need one too?"

Oh those Droopy Lupies are always napping, they are quite unique little Lupies, however we don't always get the most done because they are always stopping to take naps and have coffee breaks...Speaking of which, are you getting tired? I am starting to feel a bit fatigued myself...I believe its time for some Java, we've got a stream of lava Java running straight through our magnificent factory! Perfect isn't it! It's a french vanilla roast today! Here you are, scoop some up! Don't be shy!

As we continue our way through the factory make note that everything is edible! Entirely edible (even the equipment the candy is made on!) We have the Lupie Lollipop fields (one of my favorites, when I get a sweet tooth hankering!) Prednisone Palace( yes this is the real one that the cafeteria in Lupie-land Amusement park is named after! It is also where the Droopy Lupies live!) and Droopy Lupie Mountain (dark chocolate mountains covered with freshly mixed vanilla buttercream peaks!) The Droopy Lupies are native to the Lupie-Land Islands and their natural habitat is similar to that of our Droopy Lupie Mountains!

We have come to an end of our tour, as you have seen almost all there is to see in our magical factory, feel free to take one of our CHRONICLYsILLy candy factory bags, and fill them with what ever treats float your boat before you leave!

Jolt-of-Java: "I hope that my achievements in life shall be these-that I will have fought for what was right and fair, that I will have risked for that which mattered, and that I will have given help to those who were in need, that I will have left the earth a better place for what I've done and who I've been..."-C.Hoppe

Lupus Awareness- PSA

Here is a great PSA announcement to share about Lupus! Originally found at our Friends over at Friends Against Lupus' Page- It was a must share! Check it out- The resources have not stopped today since I've been catching up on missed time to research and recoup from the holidays! Hope you all enjoy- It's a great day to share resources and I encourage you all to share yours too- leave a comment and a link and we'll be happy to share them on our site! And feel free to spread the Lupus love!

A wonderful way to spread Lupus today! It is so refreshing to see these PSA announcements and Campaigns such as the "Could I have Lupus?" Campaign commercials and advertisements bringing Lupus into the public eye- a good prediction of what's to come for Lupus in the year 2011? We can hope!

CHRONICLYsILLy Share- What might happen in a Lupus Patient?

WHAT MIGHT HAPPEN IN A LUPUS PATIENT?

Brought to you from our friends @: The Lupus Society of Alberta

Be sure to check out the Flash version available on the Lupus Society of Alberta's home page (the above link will take you there! it's well worth the watch and really explains it in a unique and creative way- a great share!)

Normal Immune System

Body

What Might Happen in a Lupus Patient?

#1 Possibility: B-Cell produces too many antibodies, T-Helper Cell sends too many signals

#2 Possibility: B-Cell ignores signal from T-Suppressor cell to stop making antibodies

#3 Possibility: Line is scrambled thus stop signal does not get through

In A Lupus Flare

The uncontrolled antibodies in the lupus patient attack the connective tissue of the body.
This results in:

1. Direct damage to cells in many systems of the body
   
2. Inflammatory reactions caused by immune complexes which the body is unable to eliminate

Be sure to check out the Lupus Society of Alberta's page- I stumbled across it during some research and loved it so much I wanted to share it with all of you! Check out the animated flash version of it as well - where they go into further detail and break down each component/player that plays a role in the immune system and lupus and thanks to our friends a the Lupus Society of Alberta for a great resource!

Lupus Foundation of America Achieves International Consensus on Definition of a Lupus Flare!

Lupus Foundation of America Achieves International Consensus on Definition of a Lupus Flare

January 10, 2011 Source: www.lupus.org

LFA-FLARE Definition Will Make Significant Contribution to Lupus Clinical Research

(Washington, DC) The Lupus Foundation of America (LFA) spearheaded a four-year worldwide initiative with more than 120 lupus experts from 11 countries, the pharmaceutical and biotechnology industries, and federal agencies, which resulted in the first-ever global definition of a lupus flare. The development ofLupus Foundation of America Flare Definition (LFA-Flare) helps to overcome long-standing barriers to the development of new, safe, and more tolerable treatments for lupus.

For the past 15 years, many trials of new investigational medicines for lupus have failed to show significant benefits for patients. A consistent and meaningful definition for a lupus flare is critical to evaluating the effectiveness of treatment over time. The new definition will enable more precise outcome measures for future studies, such as the number of flares or the time between flares. This will have a positive impact on the quality and scientific basis of clinical trials, which are required by the U.S. Food and Drug Administration (FDA) to demonstrate the effectiveness of any new therapy before it can be approved for general use in patients.

**The consensus definition is: A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.**

“This definition addresses several controversial issues about how we look at flares of disease, which may have been interfering with the accuracy of how we evaluate new treatments,” said Joan T. Merrill, M.D., head of the Clinical Pharmacology Research Program, Oklahoma Medical Research Foundation, and LFA Medical Director.

A paper describing the definition and the consensus process is now available online and will be published in the March or April issue of the medical journal LUPUS. LFA-FLARE has high face validity and now is ready for validation in clinical studies. The Systemic Lupus International Collaborating Clinics (SLICC), a leading international consortium of lupus doctors, is evaluating this definition as a basis for modified outcome measurements of flare to provide an improved scientific basis for clinical trials.

The LFA thanks the lupus researchers from universities and industry who contributed their expertise to this project. A worldwide effort such as this brings hope to millions of people around the world who are living with lupus that new medicines are on the horizon.

The LFA’s National Research Program, Bringing Down the Barriers®, is dedicated to addressing research issues that have for decades obstructed basic biomedical, clinical, epidemiological, behavioral, and translational lupus research. The LFA’s approach to research is unique because it directs its funding to areas of research where gaps exist in the understanding of lupus, and to promising areas of study in which other public and private organizations have not focused their efforts. Using a three-pronged strategy, the LFA and its national network are committed to advancing the science and medicine of lupus by: directly funding research to close the gaps in lupus research; advocating for expanded investment in research from public and private sources; leading special initiatives; and forging collaborative efforts among stakeholders to address critical issues to advancing the science and medicine of lupus. For more information about the LFA’s National Research Program, visit www.lupus.org/research.

A big thanks to the LFA for sharing this news with all of us and the Lupus Community- I am happy to share it here with all of you! Spread the word and I will keep you updated with all the latest Lupus news and happenings as they come our way! Here's to hoping we are on a good start for 2011!