Graves Eye Disease and Hyperthyroid

Evening Thoughts: The Mystery Of It All

Tonight I drove about a mile from my house to a huge open country field and pulled off the shoulder of the road.  It was so close to being completely dark that the night sky had that familiar bluish purple cast that dissipates as it fades to complete darkness.  I went there for a specific purpose.  At 9:12PM sharp, a bright white light came up from the southwest heading toward the northeast.  As I watched the space shuttle Atlantis fly overhead high in the sky, I couldn't help but wonder in amazement.  I watched for several minutes until the light grew dim and then completely dark and no longer visible.  Amazing.

Standing outside of my car looking skyward, I couldn't help but wonder just how much manpower went into launching the space program.  It made me realize, too, how much more work there is to be done when it comes to researching and finding cures for all kinds of medical issues.  And that's where your help is needed.

A few days ago I wrote a blog post asking for your support of Bill HR 2084 (for autoimmune research) by writing to your members of Congress (at least for those of you living in the US).  I hope you'll take the time to act.  The research is important.  And a bill of this magnitude, with $43 million in autoimmune research at stake, has never been introduced before.  Your voice will make a difference.  Remember, the life you save just might be your own. 

Your Help Is Needed To Obtain Funding For Autoimmune Research: Write To Your Representatives In Support of H.R. 2084

Hi everyone!  Your urgent help is needed.  On April 23, 2009, U.S. Representative Patrick Kennedy re-introduced Bill H.R. 2084, the "Prevention, Awareness, and Research of Autoimmune Diseases Act of 2009" (PARAiD).  With this bill's passing, over $43Million of funding would be made available for autoimmune research, education and awareness. 

As many as 23.5 million Americans suffer from an autoimmune disease, such as lupus, multiple sclerosis, rheumatoid arthritis, Sjogren's syndrome, celiac, and Grave's Disease to name a few.  The passing of bill H.R. 2084 would be a major step forward in researching and better understanding autoimmune diseases.

FOR READERS WHO LIVE IN THE U.S., YOUR HELP IS NEEDED! WHAT YOU CAN DO NOW

Email your congressman/woman asking them to support this important bill (H.R. 2084).  Explain why it's important to you, and explain your personal story if you or someone you know is affected by an autoimmune disease.  Better still, ask him/her to become a cosponsor of this bill.  Be sure to keep it short, and to the point. (Find your house representative here)

Then email your senators and do the same thing:  ask for their support, tell them why it's important to you, and explain your personal situation.  (Find your state senators here)

SO HOW DOES A BILL GET PASSED IN THE U.S. GOVERNMENT? 

First, it has to be introduced.  Second, it gets referred to committee(s) that deliberate, investigate and revise the bill.  H.R. 2084 is at this stage in the process.  The majority of bills never make it past this phase.  If a bill does move through committee, then it is voted on in the House, then the Senate, then signed by the President. 

There are over 100 autoimmune diseases.  And there is no cure for them.  Some can be life-threatening.  That's why broad-based autoimmune disease research and education is so necessary.  Please show your support for this very important legislation.

Also, you can Read Full Text of H.R. 2084 here.

Victorian Tea Autoimmune Fundraiser

 

Planning on being near the metropolitan Detroit area on May the 9th?  You can support autoimmune research, patient services and general awareness by attending the American Autoimmune Related Diseases Association (AARDA) 9th Annual Victorian Tea Fundraiser.

 

Call the AARDA office at 586 776 3900 for more information.  I'll be there and I hope you can make it too!

Thyroid Awareness Public Service Announcement Featuring Supermodel Kim Alexis

As most of you know, nearly everything written about on this blog has to do with Grave's Disease and Hyperthyroidism.  But, since January is Thyroid Awareness Month, I thought it would be appropriate, and important, to broaden the horizons a bit.  In my last post I directed you to an excellent resource called the Power of Prevention.  And here, I'd like you all to see a public service announcement featuring Kim Alexis, who has Hashimoto's Thyroiditis (a form of hypothyroidism).  Do yourself a favor, get your thyroid checked as part of your annual physical. 

American Autoimmune Related Diseases Association, Inc.

I'm excited to share with you a non profit organization I discovered specifically dedicated to autoimmune diseases:  the American Autoimmune Related Diseases Association, Inc.  AARDA is the ONLY national nonprofit health agency dedicated to bringing a national focus to autoimmunity.  Let me share the first paragraph of their mission statement with you:

The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.  (Source:  www.aarda.org )

What particularly struck me about this organization is how clearly they understood the link between lack of awareness/understanding and misdiagnosis/suffering.  This is a huge problem, no doubt.  As a matter of fact, yesterday I wrote a blog post about the importance of working with an experienced team of medical professionals who see many (in my case Grave's Disease) patients.  For example, it's hard to fault the ophthalmologist when in fact most just don't see many patients with Grave's Ophthalmopathy. 

Moreover, the same holds true for public awareness of autoimmune disorders in general.  I must admit, when I was first diagnosed, when my doctor told me over the phone "you have Grave's Disease," I said "what!"  It just sounded so, well, grave.  And a "disease" no less.  Ugh!  Three years later and I know sooooo much more!

I don't know about you, but I'm excited!  One of my new year's resolutions was to take the first step in expanding the personal role I can play when it comes to advocacy beyond my little blog here.  And to get started within the first 30 days of the year.  This past weekend, that's exactly what I did.  And I found the AARDA. 

I was so excited I had to share my new find with all of you.  A team of dedicated professionals who are working hard on behalf of the millions of Americans who have, or will have in their lifetimes, some form of an autoimmune disorder to deal with. 

Note:  AARDA is a 501(c)(3) tax exempt, non-profit organization.  If you'd like to make a contribution, click here