IFAA, Tiffany and the Entire Dedicated Group with the International Autoimmune Arthritis Foundation - Thank you!

I had a very pleasant surprise at my door step Tuesday after the holiday weekend! My “regular” mail had already came. But, later in the afternoon, I stepped out on my front porch to see a large package with my name on it!! At first, I thought it was the “blue ribbons” that I am waiting on for pain awareness month. They have not sent them yet… BUT, IT was ALL KINDS OF AWESOME STUFF FROM THE IFAA AND TIFFANY! I was so thrilled when I opened it… an awesome very sturdy reusable bag, along with others that are also perfect to take to the market from the WAAD 14! I also had a nice pen with the IFFF Logo on it, and a huge book that came from the Autoimmune Summit 2015 - with all of the data from research and so forth they discussed at the Summit in New York! smile emoticon I am really enjoying lots of the data in there… extremely interesting to me… anyway, I will get a better photo up later. I had to take this one with my “web cam”. I am charging the battery on my good digital camera. So, I will make more when it is charged. Again, Thanks to IFAA, Tiffany and the entire gang… what an awesome job all of you do…. I hope to soon participate more. Due to all of the “circumstances” between my own health, My Mom’s health, then all of the other personal “agenda” that I HOPE to have basically over with in October… my hope is to get back on tract with my activism, advocacy, my own research, and doing more writing on my book, as well as working even more on my blog… by the way my blog seems to be “getting more attention”… and I am thrilled about that…

 To Learn more about IFAA, want to join in their Advocacy team and more  the URL IS:

http://www.ifautoimmunearthritis.org/

"WAAD 15" World Autoimmune Arthritis Day beginning Friday! Pick your team and Join in on the Fun!

World Autoimmune Arthritis Day

World Autoimmune Arthritis Day's 6 day virtual, online car race to collect resources anraise MAJOR awareness for autoimmune arthritis diseases is just 3 1/2 weeks away- please share this poster, print it and give to your rheumy, use it to personally invite friends, supporters, those in your community groups. The event will happen HERE on Facebook and Twitter, along with some internet navigation and sharing of awareness submissions on your own pages, so plan to tune in!

More about how it works:
1. The Race Cars will represent each nonprofit from around the world that has officially signed up to participate. They will be the Nonprofit Race Teams and will compete against each other to "win WAAD15". Winning is based on who gets the most mileage points, but they need YOU to earn those for them.
2. On May 1st registration will open at www.worldautoimmunearthritisday.org. It's FREE to register, and while you of course can play along without registering, if you do register you can help your favorite nonprofits earn mileage points AND you can earn your own mileage points too. The top 5 registered participants will qualify to win prizes of their own! Register solo or get a group together and play as a team (more details will be posted on this soon). During registration, you can pick up to THREE of your favorite participating nonprofits to support and 'race for'; each of those nonprofits will earn 25 mileage points for your support.
3. On May 15th, at 12pm ET/USA, the race will begin RIGHT HERE on this page and our Twitter page @WAutoimmuneAD. All participating nonprofits with Facebook and Twitter will also post that the race has begun and provide instructions for those just tuning in.
4. Also on May 15th, time TBD, there will be a special post for memoriam laps, where we as a community remember those we have lost to these diseases. We will ask all people to share and add names of those you are remembering to the post.
5. Those registered to race in honor of nonprofits will receive, via email the day prior to the event, the official Global Race Map, which gives times of posts, where to go learn more about specific subjects, details about all the Detours (live webinar chats) and how to register to attend those, and detailed information about the live awareness activities-including when they will post and what they will be. All others can receive this information at the WAAD website after the event has begun.
6. Nonprofit Race Teams will also earn mileage points when you "like" or "share" the posts or tweets from their account or when you do awareness action items in their honor. Registered participants will also earn mileage points for posting/turning in awareness call to action items.
7. In addition to the live social media action, including sharing up to 6 resources from EACH of the over 30 nonprofits participating and several live Detours (webinars-subjects and hosts announced soon), there will also be a page where you can submit information about good practitioners (any specialty) in your area so that we can create a map that will be available year around on our website.
8. The race will end on May 21st at 12pm ET/USA when the checkered flag waves. The top 5 Nonprofit Race Teams and the top 5 Registered Participants (individual players) and top 3 Registered Participant Teams (signed up to play together) will be announced. Trophies/plaques will be sent to the winners, along with select prizes.
Nothing like this has ever been done but we can use this to push autoimmune arthritis into the forefront for 6 days. Are you with us???

I wanted to remind everyone about "WAAD 15" that opens this Friday and will continue through the week. Here is more information about the event, how you can participate on the "Race Around the Globe" so these horrid illnesses can be "shut down" in their tracks! We hope you come, pick your team, and be there at the starting line! Ready, Set, and "Green Flag" down and ready to race!

 

"Onward and Upward" A 2nd Very Grave and Close Loss of A Dear Friend, Advocate, and a Patient of RA, Lupus, and more...

I almost could not believe my eyes as I read on Facebook last evening, that one of our "own" - in fact a 2nd one this year we lost to these Autoimmune Illnesses. Anthony Hileson was only 62 years old. He had a terrible time with RA, Lupus, and other AI illnesses, along with the brain fog and more than that the extreme pain that comes all too often with these horrid diseases.

After our loss earlier this year of Ali, who was in her early 20's... now we are mourning yet another "victim" from these diseases.

I got to know Anthony through Facebook, and became close to him due to him being in the Dallas area, and he in fact was the one that told me about my now incredible Rheumatologist. He "referred" me to Dr. Q. as well always have called him online, and Anthony was also looking into getting a pain pump shortly after the holidays, which he had talked with me in length about since he knew I had mine.

We have met him once, in fact when I was seeing my Rheumatologist. Anthony was in the hospital at the time right there by the doctors office. So, Jim and I met him for a brief few minutes. We had also had several conversations on the phone.

He wanted so much to put in all he could to help the IFAA, and everything that was related to helping be an advocate and activist and volunteer again the Autoimmune Illnesses that have now taken his life.

He was a very spiritual gentleman, kind, and wished everyone well. Even when he was very ill, he always tried his best to be online to do his part.

"Onward and Upward" was a phrase "coined" by him. So, it is very appropriate that this graphic below express his deep love of advocacy and people. May you rest in peace, without any more pain, sorrow and loneliness Anthony. Your giving of self without any selfishness at all, just to be there for others will always be remembered.....

and if you care to see more about Anthony, you can find his Facebook page at:

https://www.facebook.com/autoimmunearthritis.Anthony

One of Our Own Tiffany Westrich on this mornings session of "The Doctors"!!!!

An International Autoimmune Arthritis Movement of awareness is launching THIS FRIDAY, December 19th, the date the International Foundation for Autoimmune Arthritis's short segment on Rheumatoid Arthritis airs on national television.

Use this link to get to the page on "The Doctors Site"IFAA/IAAM" Tiffany Westrich Robertson TODAY on "The Doctors"

Will YOU join the Movement? Here's how:

1. Be willing to share your story on Social Media starting on December 19th, 2014. This is the date the Doctors' will air a short segment on Rheumatoid Arthritis, featuring IFAA's CEO and this is when YOU should start sharing YOUR story about your journey with Autoimmune Arthritis!

2. Decide what you want to say. In just a couple of paragraphs, tell the world what makes your disease different than other arthritis and autoimmune diseases.

3. Share via Social Media. Tag IFAA's Facebook and/or Twitter. Please also use hashtags #AutoimmuneArthritisAwareness and #IAAM.

Why should the world just view ONE story on the 19th when they can see 100's???? If you are posting, we'll be sharing!

Note: This Movement will begin on Friday, but we'll keep it going as long as YOU keep it going. Want awareness for a day, submit for a day. Want it for a week? Keep submitting for a week. Want it for a YEAR? Keep 'em coming, we'll keep on raising awareness together!

International Foundation for Autoimmune Arthritis 

  you can share by posting on this page (you can start your own post) and we will start sharing stories on Friday! You can post after Friday as well, we will keep sharing stories as long as they keep coming in!

An International Autoimmune Arthritis Movement of awareness is launching THIS FRIDAY, December 19th, the date the International Foundation for Autoimmune Arthritis's short segment on Rheumatoid Arthritis airs on national television.

Will YOU join the Movement? Here's how:

1. Be willing to share your story on Social Media starting on December 19th, 2014. This is the date the Doctors' will air a short segment on Rheumatoid Arthritis, featuring IFAA's CEO and this is when YOU should start sharing YOUR story about your journey with Autoimmune Arthritis!

2. Decide what you want to say. In just a couple of paragraphs, tell the world what makes your disease different than other arthritis and autoimmune diseases.

3. Share via Social Media. Tag IFAA's Facebook and/or Twitter. Please also use hashtags #AutoimmuneArthritisAwareness and #IAAM.

Why should the world just view ONE story on the 19th when they can see 100's???? If you are posting, we'll be sharing!

Note: This Movement will begin on Friday, but we'll keep it going as long as YOU keep it going. Want awareness for a day, submit for a day. Want it for a week? Keep submitting for a week. Want it for a YEAR? Keep 'em coming, we'll keep on raising awareness together!

(Photo: Left and Right- Doctors from the episode, Center Left- CEO of IFAA, Center Right- Pfizer Representative/Segment Sponsor)


http://www.thedoctorstv.com/articles/2865-managing-rheumatoid-arthritis

And above is the link to see Tiffany and the important information she shared!!!!
 

My Very Own Way I Can Show "My" Little piece of the World I "Represent" International Foundation for Autoimmune Arthritis

             Representing International Foundation of AutoImmune Arthritis

I did not get to put these photos up yesterday with the doctors visits and so forth. Holidays, RA, Lupus, pain, stiffness, medications, stress, all rolled up into one huge ball when you are right in the middle of any type of Chronic Pain, Disease, and/or Autoimmune Arthritic Diseases.

I have shared the "story" about this bracelet (that by the way I AM WEARING)! "proudly" I may say also. So, proudly, I find myself not wanting to take it off. So, it is a wonderful idea that there is one of the "rubber types" that come with these. That way I can shower, do laundry, housework, or just about anything, and still have "IFAA" right on my hand, and at my side! Tiffany "hand makes" every one of this original "Buckle Me Up" Bracelets just as she did from the very 1st one. Which is how IFAA took its' first baby steps, into a "Movement" and then quickly to a "Non-Profit" Foundation, which is moving ahead for patients by leaps and bounds! These are a bit "blurry". I took them hurriedly yesterday morning. But, I'll get more today that are clearer and much better. But for now I just have to share these!!!

A bit about my own "Active Volunteer" journey. I happened to have met Tiffany Westrich Robertson, who is the "founder" of what now is known as the IFAA. Through a mutual Facebook friend, I found out about an "art" show that would benefit RA, Lupus, Still's Disease, Juvenile RA. Sjogren's, MCTD, UCTD along with the other autoimmune arthritic diseases that I suffer from, but I also am and have been a very strong ADVOCATE for in getting things changed for us as Patients, Caretakers, Friends, Family, and the Medical Profession. I had sent a message to her about my two published books! I thought they may help the "cause". So, I offered to send a copy of both to her for the "art" show that was to benefit this cause! I got to be friends with Tiffany and follow her life a bit through Facebook. I quickly found out her story about RA, and the same "rivers" that flow way to long before we get out of rushing waters of these illnesses was her journey also. I found out from there about her foundation, volunteering, and I knew beyond a shadow of a doubt I needed to be an Active Volunteer! Thus here I am.... I share these with you, and they are a proud reminder of the difference I am watching unfold through IFAA!!!!   Rhia


Here is what the beads and the design mean on the "Buckle Me Up" Bracelet as it was called in its' beginning.

The 3 silver beads & 3 black beads represent all people working together to make a difference. Red is the color of strength & signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more people to join the movement to raise a global awareness about Autoimmune Arthritis diseases ...

"The International Foundation for Autoimmune Arthritis".

The "IAAM" was the "infant" stage of IFAA. Beginning as a "Movement" - it was named "International Autoimmune Arthritis Movement", then "moved" forth to be the IFAA.

So, the "IAAM" means (on the rubbery bracelet)

I am..

A Leader For Change,

Hopeful,

A Believer in Progress,

And Rebranding Stereotypes.

I Am an Advocate for

Autoimmune Arthritis Awareness.

    http://www.IFAutoimmuneArthritis.org