Thank You To All Participants!

Amazingly, two months have passed since AS Awareness month.  More projects are coming from many sources and we all have lots to look forward to in the coming months which will prepare us for another terrific AS Awareness month in 2012!

Thank you for the amazing participation and art work for the campaign for Hope and Apples. Together we provided a body of work which did and will bring some wonderful awareness to others. Please keep sending your friends to the page to help them understand our disease better. All of us who participated or shared in the information and project were touched by your submissions and were moved by the strength and courage shown in your personal stories.

A special thank you to Kelly Christal Johnson for her amazing efforts in rallying the AS community around this project and to Rick Powkerwinski for his spectacular Twitter skills. Kelly & Rick worked tirelessly to make this project the huge success that it was.

Hope & Apples was created as a place for people living with Spondyloarthritis to share their stories.  It was made by the community for the community. Since Hope & Apples was a small grassroots effort – we are all focusing on our next individual contributions to the AS Community.  Thank you all again!

Sending positive thoughts to all of you!

 

 

Congratulations – Spondylitis & Arthritis Awareness Months were a HUGE Success!

Miranda - Hope & ApplesWhat an amazing April and May we’ve had!

April was Spondylitis Awareness month followed quickly on its heels was World AS Day and we wrapped things up nicely with Arthritis Awareness month ending yesterday with some amazing video entries to the SAA contest! This whirlwind of activity created a year like we’ve never seen with over 100 entries to Hope & Apples as we all worked together as a community to raise our collective voices by telling the world our stories. Congratulations!

Some of the other fantastic projects and activities were:

  • GASP’s Fusing Together Campaign – photos and a culmulating video went viral on twitter and received a “Top Tweet” on World AS Day!
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  • The NYC SAA Support Group spent World AS Day at the crossroads of the world in Times Square and spoke with hundreds of people about backpaintest.org
  • World AS Day Twitter Chat and website.
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  • Arthritis Walks – The participation by advocates in walks all over the country sponsored by the Arthritis Foundation
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  • The Spondylitis Association of America worked to promote all these efforts and we’d like to thank them for their continued support as well as contributing many of the prizes that will be going out to our participants. Their April/May video contest has some amazing entries. Please vote for your favorite!
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  • Thank you also for all the individual efforts of everyone featured on the pages of Hope & Apples to share and spread the word on Facebook, blog discussions, twitter, and videos! This year was a truly amazing new step in bringing the community together. A special shout out to Edwin Menting for a great concert and fundraising event, Grace Dorey, Maya Klauber, Erin Millard, Kelby of PeachyPains.com, Zach Thies, Michael Smith, Tom Contrino, and the entire staff of the Spondylitis Association of America.

WorldASday SeminarMany thanks to the Australian Physiotherapy Association for Sponsoring the AS You See It Seminar in Brisbane, Australia that educated hundreds of Physio’s/PT’s about Spondylitis and highlighted our Hope & Apples campaign and stories to the world. A special shout out to Irwin Lim and Kathie Melocco for their efforts!

There are so many amazing groups and bloggers doing such great work. Please visit all of the sites below and lend your support by signing up for their email or RSS updates and please leave a comment behind whenever you can!

Organizations and Groups

  1. Spondylitis Association of America (http://www.spondylitis.org/)
  2. ASAP: Ankylosing Spondylitis Awareness Project on Facebook
  3. Bulgarian Ankylosing Spondylitis Patient Society
  4. CASP: Coalition of Ankylosing Spondylitis Patients(http://www.thecasp.net/)
  5. GASP: Global Ankylosing Spondylitis Project 2011 (http://www.facebook.com/home.php?sk=group_192443460790412)
  6. Kick AS (www.kickas.org)
  7. NASS: National Ankylosing Spondylitis Society - http://www.nass.co.uk

Websites

  1. AS Answers (www.answers.ankylosing.org)
  2. Spondyville (http://www.spondyville.com/)
  3. United Voices For Ankylosing Spondylitis (http://www.unitedvas.com/
  4. Hurting But Hopeful – http://hurtingbuthopeful.org

Personal Blogs written by AS’ers

  1. Hurting But Hopeful http://hurtingbuthopeful.wordpress.com
  2. Ankylosing Spondylitis Mom (http://www.asmom-meloni.blogspot.com)
  3. Kate Alice Cookbook  - http://katealicecookbook.com
  4. Loving With Chronic Illness  - http://lovingwithchronicillness.blogspot.com
  5. Playing The Hand I Was Dealt – http://playingthehandiwasdealt.blogspot.com/
  6. Endless Trax – http://endlesstrax.wordpress.com/
  7. Live. Art. fully – http://livelifeartfully.blogspot.com/
  8. The Chronicle Disease http://thechronicledisease.blogspot.com/
  9. The Feeding Edge & Art Apple A Day (http://thefeedingedge.com/)
  10. Living with Ankylosing Spondylitis - http://living-with-ankylosing-spondylitis.blogspot.com/
  11. Peachy Pains - http://peachypains.com/
  12. Book Reviews by Jackie - http://feline9-bookreviewsbyjackie.blogspot.com/
  13. Locked In My head - http://komodolover.wordpress.com/
  14. Do or not do… there is no try - http://corstagdu.wordpress.com/

 

Thank you again for a few super months!

 

 

 

“I kind of feel like if you don’t talk about it, it will eat you alive.”

Wonderful connections and friendships are being made online everyday by strangers connected by one simple fact – they have a form of spondylitis. Facebook is where I Erin Millard from Vancouver, British Columbia.

Erin asked me if I would design a t-shirt for her Diva On The Run – an 8k  she ran the end of March for the Arthritis Society in British Columbia. I was thrilled to do it. I found her courage to run while having active AS truly inspiring. Please read the two stories below about Erin about her continued efforts and upcoming fundraising walks. She is fighting for AS awareness and doing an amazing job! Congratulations Erin – you Rock!

Putting a new face to arthritis advocacy

North Vancouver woman walks for awareness

Please send us your awareness stories too, so that we may share them here on Hope & Apples!

Jenna

 

 

“In the photo I’m not bending over looking at my daughter. I am standing straight up. I am standing tall.”

Heather Ensley - Hope & ApplesMy name is Heather I’m 39 years old. Today,I celebrated Mother’s Day today with my 4 year old daughter and my husband and family.  And as you can see by my A.S. Apple photo, I have Ankylosing Spondylitits, spinal fusions,and permanent thoracic curvature. In the photo I’m not bending over looking at my daughter.  I am standing straight up.  I am standing tall.

I have been in a terrible general flare for a while.  I have wanted to participate and tell my story, but as all too often happens this disease gets in the way. So for now I will give the short and sweet.

I was about 13 when I started having heel and knee pain on my right foot and leg. Contstant, severe pain, that my parents would take me to multiple doctors for multiple xrays only to be told they did not know.

To read more of Heather’s story please visit her page.

“In just 5 weeks we’ve shown that with the right idea and a little bit of elbow grease we are an amazing group of people.”

Congratulations!

Spondylitis awareness month 2011 has been a whirlwind! The Hope & Apples team would like to thank each and every one of you for your heartfelt stories, amazing apple art, hard work, and the determination to raise our collective voice about spondylitis.

Together, with a campaign like Hope & Apples, we captured the attention of health providers and large organizations. OUR COMMUNITY – the patients – DID IT.  We did it with passion and grace – and we will continue our efforts to get to our goal of 1,000 stories and 1,000 apples! But in just 5 weeks we’ve shown that with the right idea and a little bit of elbow grease we are an amazing group of people. So again, thank you to every testimonial submitted, each guest apple in our Apple Orchard from friends and loved ones, and to all the efforts you all made to share this campaign – even with strangers (now that is health activism!) on facebook, twitter, and most especially by getting comments. The comments are touching and poignant and each one shows that your story was read and you and all spondylitis sufferers were understood a lot more because of this.

We were so impressed and amazed at the passion you all showed the world and that we decided to add an additional prize because first and second were so close! So without further ado – We would like to announce our prize winners.

All of you will receive:

  1. A special commemorative Hope & Apples 2011 t-shirt!

The first 25 entries will also receive:

  1. A blue SAA Stand Tall Bracelet
  2. A Henri & The Bee Calendar

 

First Place – Apple iPad (gift card in the amount of $499usd)

Congratulations to Amy Burden of Australia for accumulating the following (at the time of deadline):

Facebook likes – 765

Tweets – 141

Comments – 12 unique comments/commenters

Total at time of deadline – 918

Second Place – Apple Gift Card (gift card in the amount of $200usd)

Congratulations to Lori Laverty-Hastings of Canada for accumulating the following (at the time of deadline):

Facebook likes – 627

Twitter – 89

Comments – 60 unique comments/commenters

Total at time of deadline – 776

Third Place – Apple iPhone (gift card in the amount of $99usd) and a case designed for you by Jenna

Congratulations to Denise Esterly of the United States – for accumulating the following (at time of deadline):

Facebook likes – 198

Tweets – 144

Comments – 30 unique comments/commenters

Total at time of deadline – 372

Congratulations everyone!

Jenna, Kelly, and Rick

“First ever World AS Day twitter chat – Our voices will be heard!”

Twitter will be abuzz from 7.00am AEST (Brisbane), 2.00pm (California) and 5.00pm (New York City) with a real time WorldASDay chat The hash tag for the event is #WorldASDaychat !

 

Sample Topics will include

Q 1: How long did it take for you to get diagnosed?

Q2: Which health practitioner first suspected AS

Q3: How important was the role of your physio in your treatment plan?

Q4: If you could raise knowledge about AS awareness what would be the one thing you would like known about this disease?


 

 

 

“Most days, I’m glad that I don’t look sick. But some days, it would be nice if my exterior did some of the explaining for me…”

Mary Cyrus - Hope & ApplesI am a 22-year-old woman. I’m diagnosed with a fun mix of Psoriatic Arthritis and Undifferentiated Spondyloarthropothy. I fit the diagnostic criteria for Psoriatic Arthritis but I have a few extra symptoms so my rheumatologist saw fit to throw in the USpA label too. Recently, I’ve taken to just telling people I have “Psoriatic Spondylitis” which I guess is accurate too.

I’ll let you in on a secret. It’s not so much because it’s easier to say. Really, it’s because it lets me avoid the word arthritis. Even though I’m all of 22 and it seems it should be obvious that something is amiss if I have arthritis, I can’t count the number of times people have ignorantly assumed it’s the same thing as osteoarthritis. “Oh, my grandmother has arthritis!” is one of my personal favorite responses. I always bite back my snarky response of, “Oh, has she been suffering from it since age 18 too?” but maybe I should start finding a nice way to point out their ignorance. I’m not increasing awareness at all when I passive-aggressively seethe. The irony is that I might be working out with their osteoarthritic grandmother. I regularly attend a chair aerobics class for senior citizens because it’s the best fit I’ve found for staying active and minimizing the resulting pain.

Read more of Mary’s story on her Hope & Apples page.

“I’ve decided to set my sights on something that I once thought was absolutely impossible: running a marathon.”"

John Winter - Hope & ApplesPrior to my freshman year of college at the University of Delaware, my lifestyle was active and athletic including playing lacrosse, soccer and tennis. During the course of my freshman year at college, I started experiencing bouts of chronic back pain that limited my ability to partake in these activities that were once very easy and enjoyable for me.

Ultimately I lived with this chronic pain on and off for nearly 15 years and had limited mobility which lasted into my early 30s. At points, the pain and or stiffness would present itself in my neck, chest, hips and lower back, sometimes nearly incapacitating me for days at a time. I also had a few bouts of uveitis, or inflammation of the eye.

To read more of John’s story and find out how he’s raising awareness, please check out his page.

Voting Begins!

Congratulations! You have all done an amazing job with this years awareness campaign and we are so pleased to open the voting for the Apple iPad - see voting details below:

Read all the Spondylitis stories and look at all the apples, then leave a comment, and share or tweet your favorite submissions.

Your votes will be counted one of three ways; facebook “likes”, tweets and comments left on the person’s PAGE.  Spam will not be considered as a vote.  Each person may give every submission a vote, but the complete entry (must have a story and an apple) with the most combined votes via facebook likes, tweets, and unique page comments generated from the Hope & Apples Website by May 5, 2011 at 12:00am, EDT will win the Apple iPad.  (We can ONLY track likes, tweets and comments that appear on www.hopeandapples.com so make sure your votes are COUNTED and entered via this website.) You can email your friends and family and ask them to vote – the more you share our stories with the greater our outreach and awareness!

  • The sooner you get in your submission the sooner you can start getting votes.
  • Deadline for entry to win the World AS Day prizes is May 4, 2011 at 12:00am, EDT.
  • Voting for the World AS Day Giveaway of the Apple iPad ends May 6, 2011 at 12:00am, EDT.
  • The winners of both the iPhone and the iPad will be announced during the Global AS You See It Webinar on May 7, 2011 sponsored by the Australian Physiotherapy Association. For more information on the webinar please visit www.worldasday.com.

Best of luck to everyone – not to worry Hope & Apples will continue to find ways to share our stories and Spondylitis Awareness messages and testimonials. This is not the end – only the beginning!

Jenna, Kelly, and Rick


 

 

“Doctors need to start taking what the patient tells them to heart… Our stories will have a positive outcome. Our voices will be heard..”

Denise Esterly - Hope & Apples“My name is Denise and I have been inspired by others to share my story. I understand how important it is to bring awareness to such a frustrating disease as Spondylitis.  I feel as I write my story for other people to read, it will also bring understanding to myself on how awareness is key to future sufferers.  I am where I am today only from pure determination to finding the answers for the symptoms I knew were not normal for my body.  The road was long but at the end I feel that I have educated myself and also educated doctors along the way.

Looking back now, it all began in early grade school.  I had a foot operation that doctors believed was rheumatoid arthritis.  Back then, I guess, there was little knowledge and continuing observation did not happen.  After the surgery it seemed to have ended doctor appointments.  So life went on as normal.  It was not until around middle teenage years when pain, fatigue, and frustration started.  I eventually was diagnosed with Lyme’s disease and treated with amoxicillin and sent on my way.  Back then you would tell the doctor what is wrong and take the advice of the physician and move on.”

 

Read the rest of Denise’s Story on her page here at Hope & Apples