One Patient's Positive Perspectives

 4/16/14 UPDATE: Arizona Walk to End Lupus Now™ rescheduled to sunset on 9-27-14 and relocated to Scottsdale Center for the Arts

Scottsdale, AZ Walk to End Lupus Now™

LFA 2013 Walk Stroller

Walk to End Lupus Now™
2013 Scottsdale, Arizona

May 3, 2014  September 27, 2014 will bring the exciting 5:00 p.m. sunset start of the Scottsdale, Arizona Walk to End Lupus Now™.  Last year’s Lupus Foundation of America (LFA) walk in the Phoenix area was co-sponsored by the City of Scottsdale.  It began at mid-morning and ended around noontime, right in the middle of a lovely late spring Arizona day.  This year, we have planned a little more sensible later start. Hurrah!

Registration is at 5:00, opening conversation at 5:30 and walk take-off starts at 6:00 p.m., just a little over an hour before sunset (7:13 p.m.) when the day’s UV intensity will be waning.  Due to the late day start, many sun sensitive lupus patients (like me) won’t have to settle for being sun-dodging “virtual” walkers!  Instead, we can proudly join others by physically walking the course!  My lobbying efforts for a later walk time started over a year ago, as we planned last year’s 2013 walk.  The irony of not being able to actually walk because of the sun, eventually began to dawn on me as last year’s walk day gradually approached.

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Other virtual walkers…

I eventually realized that a noon-time end of the race would prevent me and many other sun-sensitive patients from safely walking the course.  I wondered if some lupus patients might even just bypass signing up to attend, all together, or whether many might choose to spend extended time in the sun, just to take part.  I knew I just didn’t dare!

Just a few months before last year’s walk, I had foolishly escorted 10 job candidates back and forth between buildings at work, conducting tours of our offices.  I spent no longer than about 5-7  minutes making each trip, but before the day was over, I had made 20 trips back and forth, logging well over 2 hours in the sun.  Later that week, I became very sick with a systemic lupus flare, including CNS problems, arthritis and rashes on my face and hands.  It was a few weeks before I felt like myself again.

So, while I gathered supporters for last year’s walk, I explained about my plans as a “virtual” walker, and how the sun was my enemy, and that I was going to hang out in the shade helping in the registration booth.  Everyone understood, and supported and encouraged me to do my part.  Thankfully, generous friends, family and co-workers also support my “virtual” walker status with their donations to LFA.

Sunlight

So, when last year’s walk day arrived, my husband helped me sign in the other walkers in the shade of the registration ramada. Then, he headed out with all the other “real” walkers on the course, while a few of us “virtual” types stayed behind.  I met new friends and chatted with other “virtual” participants.  Meanwhile, the rest of my walk “activity” included signing in a few late-comers, watching the walkers leave, and waiting for them to return.

Post-walk festivities were held a noon-time while walkers gathered around a stage set up in the park’s open noonday sunshine.  So, while still sitting under a ramada and watching from afar, my walk role continued to feel a little more like that of a watcher than a walker.  However, I had a lot of fun!

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Toni Grimes, 2013 & 2014
Arizona Walk Chair

I was glad to see so many people had come out to join in the Walk.  It was awesome!  As I watched the closing from the distance, I reflected a little, and realized how much I had enjoyed the day in the park, thankful for the shade, and grateful to have enjoyed some fresh air.

2013 Arizona Walk - David

2013 Walk Arizona
LFA’s David Juliano

Last year’s walk ended as a huge success, raising thousands for the Lupus Foundation of America and greatly exceeding our expectations by the numbers who attended.  We knew we would have to move this year’s walk to a larger venue.  The upcoming May 3, 2014 Walk to End Lupus Now™ will begin at 5:00 p.m. at Eldorado Park in Scottsdale, Arizona.  The City of Scottsdale is a co-sponsor again this year.

This spring and fall, similar walks are taking place in cities all across America.  To find out more about the many other LFA Walk to End Lupus Now™ activities, visit www.WalktoEndLupus.org.  You can find out if there will be a walk in your area, and sign up for that walk as a real or virtual walker, and even organize your own walk team.

This year, I’m very enthused about the prospect of really walking in our 2014 event, health permitting!

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Join my team?

If you are in our area, would you consider participating with me as a part of my team? Please sign up to walk, feel free to join my team, and then go out get a handful of sponsors.  Most of my sponsors last year donated between $5 and $25 each, so between my husband’s sponsors and my sponsors, we raised a few hundred dollars.  Everyone’s donations together mattered!

If you cannot attend, would you consider being a “virtual” walker like I did last year,  especially if there are no plans for a Walk to End Lupus Now™ in your area?

If you can’t walk or join the Lupus Adventurers Team, would you consider leaving a comment to cheer us on or even donate?  If you would like to support me by giving to our Scottsdale walk, please make a secure donation at:

http://lupus.donorpages.com/ArizonaWalk/LupusAdventurer

6.27 LUPUS WALK Master

Lupus Adventurers

All online donations are sent securely and electronically directly to the Lupus Foundation of America, a 501(c)(3) non-profit corporation.  (Walkers never see or handle any online donor financial information.)  Donors receive donation receipts after the walk and all donations are fully tax-deductible.

Thank you!

LupusAdventurerSig

References

“Sunlight” is an excerpt from “Lupus: A Patient Care Guide for Nurses and Other Health Professionals,” 3rd edition,  pg. 13, an un-copyrighted digital publication of the National Institute of Arthritis and Musculoskeletal and Skin Diseases National Institutes of Health, Bethesda, MD, available free of charge at www.niams.nih.gov (liberal duplication and distribution is encouraged.)

Walk to End Lupus Now™ is a registered trademark of the Lupus Foundation of America.

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Comments on: "POSTPONED: Walk to End Lupus Now™ Scottsdale, AZ was 5-3-14 >> Rescheduled to 9-27-14" (3)

  1. I was just diagnosed with SLE. Think this might be a good place to meet some people & get support with this disease. Thanks for your posts, Sharon

  2. Thank you for posting information about your walk, and how to donate. I love charity walks and used to participate in them as often as I could, but it has become difficult to do so because of the issues you mentioned. It was very comforting for me to read about your thought process, and how you have changed plans based on the sun sensitivity common to so many lupus patients. You’re a great advocate!

    • Martha, perhaps you can be a virtual walker now in these type of events. This year if God gives me good health I hope to walk in ours. Thanks for sharing your comment! LA

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