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AARDA and “My Autoimmune Story”

AARDA and “My Autoimmune Story”

The American Autoimmune Related Disease Association, or AARDA, launched a video series called “My Autoimmune Story” to increase awareness and education of autoimmune disease.  Actress Kelly Martin, who is a spokesperson for AARDA, started off the series with a video of her own. She speaks about losing her sister to lupus and how it has affected her. She also speaks about her role as spokesperson and being dedicated to getting the word out about autoimmune disease.  Here’s her clip. ūüôā

Press Release:


Emmy-nominated Actress Kellie Martin Shares Her Story, Calls on Others to Share Theirs, Too

New Survey Reveals Need for Increased Awareness/Education of Autoimmune Disease
DETROIT, March 28, 2013 – The American Autoimmune Related Diseases Association (AARDA) has launched its new “My Autoimmune Story” video series on its YouTube channel with the first story contributed by AARDA’s longtime spokesperson, Emmy-nominated actress Kellie Martin.

Part of AARDA’s 2013 March is National Autoimmune Awareness Month activities, the goal of the new series is to give the 50 million Americans afflicted with autoimmune disease (AD), as well as their families and friends, a national voice and platform to share their personal story.

“Preparing and sharing our personal autoimmune stories will help build critical mass and focus national attention on a major disease category in this country that is often overlooked,” said Martin, who has served as AARDA’s spokesperson since 1999. “Imagine the impact we would have if just one percent of the 50 million Americans suffering from autoimmune disease uploaded a video… that’s 500,000 stories.”

AARDA hopes by collecting and featuring these short videos, it will help educate people about the widespread impact of ADs

, the difficulties in getting a diagnosis, the family or genetic component and the financial and emotional burden of living with these chronic illnesses.

AARDA is asking Americans who have been affected by AD – patients, families and friends — to post a video response to Martin’s video, sharing their autoimmune story in a 1-3 minute video vignette (


Wow, if only 1 percent of the 50 million people made a video….think of the impact of that could bring to raising awareness buy paroxetine!!  That’s an incredible amount of people dealing with autoimmune disease in this country. Does watching this make you want to tell your own story? It does for me. Here is the link to go directly to the video * click here.*  If you’re like me and you’ve never posted a video response to a video before, here is a link to a short tutorial that walks you through the steps pretty easily  * click here.*


Sondra DuBose’s autoimmune story. Check it out ūüôā


I’m totally nervous about doing this but I’m going to do it. Are you ready to tell your story too?












Video killed the radio star… *UPDATED-with link*

Video killed the radio star… *UPDATED-with link*

But not the 80’s tv and movie stars. ¬†What do George Wendt, Jason Alexander, Tonya Harding, Philip Michael Thomas (Tubbs), Kelly McGillis, Katerina Witt, Roger Moore, Ricki Lake, (I’m not done yet!) Corbin Bernson, Lou Ferrigno, **Dolph Lundgren, Robert Englund (Freddie Kruger-eeeek!), Darryl Hannah and Peter Falk all¬†have in common??? ¬†Singing! This rockin video, Let it Be. No really, let it be. I hope you enjoy this as much as I did. ¬†Wait for it….wait for iiiiit…AIR GUITAR! Weee Hooooo!!! ¬†Enjoy!

Oops, I didn’t know I couldn’t use the video-they have the embed code right there under it…

Anyway, here is the link to view it on You Tube. Enjoy!       Let it Be

**Does Dolph look exactly the same as he did back in the day?? He actually looks a little bit younger to me.

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Pepsi Refresh Project; Cure JM in 4th Place!

Pepsi Refresh Project; Cure JM in 4th Place!

Introducing the Pepsi Refresh Project. Pepsi i...
Image via Wikipedia

I posted earlier about Cure JM having a chance at a $250,000 grant from Pepsi and we still do! Voting is open until the end of August. In July we were in 12th place and as of today we are in 4th. Woot Woot!!¬† The top two will each receive the grants.¬† This is so amazing, it is truly within our grasp if we all vote and pass along to our friends to vote too.¬† Will you please take a moment and text to vote, stop in at Facebook and vote and please ask your fb friends to do the same.¬† It is such a worthwhile cause, I know firsthand the pain and crippling effects this disease has and I can’t even imagine a child having to go through any of it.

To find out more about Juvenile Myositis and the organization Cure JM, check out the video and follow the links below to vote. Pepsi is giving us an amazing opportunity to help our kids with JM and we are so close! Thank you to all of you who are following this and voting. God Bless!

A message from the facebook group:

Thanks for making a difference by helping Cure JM move into 4TH PLACE in the Pepsi Refresh contest, where we are competing with over 400 organizations for a $250,000 grant.

We need to be in the TOP TWO at the end of August to win this grant. Every penny of this grant will go towards research, including an important JM genome study and a cardiovascular risk study in patients with JM. The remaining funds will go towards the Cure JM Program of Excellence research center in Chicago.

We would like to share a recent Facebook post from a JM family, who has played an integral role in the Cure JM Foundation:

“Know how I remember to vote everyday???….Inserting Mason’s feeding tube, giving the IV meds he needs this morning to keep him alive, plus the other meds used to strengthen his depleted bones, and the meds to lower his blood pressure so his enlarged, calcinotic heart will hopefully get better; replacing the pain patch…”

Please vote so that Mason and all of the children with JM can have hope for a better future. Vote THREE times each day, everyday to help Cure JM:

– Text Vote to Pepsi (73774) Type: 100850 to vote *(Stnd txt msg rts apply)
– Vote via FB app:;
– Vote for our entire “Kids to Win” team at:;

Sign up for Daily Voting Reminders (and be entered into a contest to win a FREE iPad if Cure JM wins!)

, please register here:; (Note: Names and emails will NOT be shared with anyone and are only used for daily voting reminders).

Cure JM Partners in Pepsi Gulf Projects
These groups in the Gulf Projects category are heavily supporting Cure JM. Thank them by using your additional votes in the Gulf categories, which are completely separate from the “regular” Pepsi Refresh voting. Voting links for the three groups we have aligned with are as follows:;;;

Buffalo Humps and Muffin Tops, Welcome to the World Of Prednisone!

Buffalo Humps and Muffin Tops, Welcome to the World Of Prednisone!

This video is by Lisa Copen, founder of¬†Rest Ministries;¬†a Christian non-profit for the chronically ill. ¬†Rest Ministries puts out Hopekeepers Magazine as well as hosting a social networking site called Restministries and Hopekeepers Sunroom. ¬†I’m a big fan of Lisa, who started this all up on her own while battling crippling RA. ¬†If you check out the site you’ll find a bookstore that has some really good books on chronic illness, invisible illness, and more. She’s definitely one of my inspirations, one of my heros!

OK, here’s my disclaimer. ¬†This is not a paid advertisement for any of the above. This post is my opinion, from my perspective. ¬†With that said, here ya go.


Until next time

The Power of 10

The Power of 10

I am¬†bed-bound¬†at the moment and pretty darn low. ¬†I have written and revised and rehashed a post until is was about 2 sentences long to cut out all of my whining and/or negativity as my body is really kicking the crap out of me. ¬†I’m just going to post this awesome video about Erica.

The Arthritis Foundation has a campaign called the Power of 10.  You watch the video

, forward it to 10 people, and give a gift of 10 dollars. ¬†Let’s spread the word. ¬†Just click on the Power of 10 link and check it out. ¬†What a really great simple way we can all make a difference. ¬†God Bless.

Thanks for hanging in there with me,


The story of ‘Lucy’ by Julian Lennon and James Scott Cook

The story of ‘Lucy’ by Julian Lennon and James Scott Cook

Here’s a little info from Julian Lennon about¬†Lucy. ¬†I really like the song, it’s catchy. ¬†Check out the video, it’s an interesting story, and remember you can download the song from iTunes and portions of the proceeds goes equally to The Lupus Foundation of America (LFA) and the St. Thomas Lupus Trust in London.

This is a short PSA ūüôā

And now the video and song!.Enjoy and don’t forget to purchase a download. It’s helps fund research for a cure!

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Until next time~


Wordless Wednesday Wideo

Wordless Wednesday Wideo

I found this amazing video on Vimeo, it’s a pretty cool site if you’ve never checked it out. ¬†Oh wait, these are words. ¬†Since I already blew it I’d like to credit the video-it’s by Lonny Quattlebaum, the skies in Wichita Kansas in June. ¬†Enjoy


Cloud to Cloud Activity from Lonny Quattlebaum on Vimeo.

The Arthritis Foundation, “Inspiring Others”

The Arthritis Foundation, “Inspiring Others”

This video asks to forward on to friends and family and this is the fastest and easiest way to do it!

I heart the Arthritis Foundation!

I’ve been gone for a few months. ¬†I’ll go into that in another post

, loooong story. ¬†I would like to apologize to all the readers who left a comment in my absence. ¬†I have comments set on moderation so they won’t show up until I see them and unfortunately I didn’t get them up until tonight. ¬†Thank you for reading my blog, and thank you for your comments. ¬†I will respond to them tonorrow, my eyes are closing. (wimp here) ¬†Thanks again everyone for hanging in there with me. ¬†And don’t forget to forward the video!!

Until next time


New Lupus Drug on the Horizon?

New Lupus Drug on the Horizon?

BENLYSTA.¬† That is the name of the potential new drug for lupus; the first in 50 years!! I am excited and I don’t even have lupus ūüôā¬† Lil humor here…¬† So far it has passed the first clinical trial and it’s heading into the next one.

Here is an excerpt from the President and CEO of the Lupus Foundation of America:

“We look forward to hearing the results, this fall, of a longer-term Phase III clinical study of BENLYSTA. The data from both studies will be evaluated by the U.S. Food and Drug Administration (FDA). Should the FDA ultimately approve BENLYSTA, it would become the first drug successfully developed to specifically treat lupus since the disease was discovered more than a century ago.

I happened upon this yesterday over at On the Road to a Cure, the LFA’s blog.¬† It’s a great resource for info on everything lupus.¬† They also have an extensive list of lupus blogs on their blogroll, if you haven’t been over there you should go check it out.

And now for this amazing

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, exciting, historic news, here’s President and CEO of the Lupus Foundation Sandra C. Raymond to tell us all about it!!

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