One Patient's Positive Perspectives

Posts tagged ‘Lupus Foundation of America’

Check Your Lupus Awareness and Play the Lupus Game at Lupus.org

Know Lupus Game My Score 100 PercentPlay the Know Lupus game online… and earn donations for answering awareness questions.

Try to get through both levels with 100%  It was fun, so check it out and spread the word to others to check out this fund lupus awareness activity at the Lupus Foundation of America site.

Play:  The Lupus Game and see if you can beat the challenge!

 

Walk to End Lupus Now: Virtual Walking Today

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Virtual Walker

Today, I have an important previous long-standing commitment that has me heading out the door in about 15 minutes, but not to today’s walk.  However, I am going to be a “virtual walker” and will be there in spirit. Today is the big day for the Walk to End Lupus Now in Scottsdale, Arizona. (See my previous post for details.)

It starts at 4:00, so my thoughts will be with the other walkers who are able to attend personally as I head out to other commitments.

You can help support our Arizona fund-raising efforts for the Lupus Foundation of America activities here in Arizona, by supporting me at the donation site:

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

Thank you…

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Arizona Walk to End Lupus Now – Rescheduled!

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Sunday 11-16-2014

Walk to End Lupus Now – Rescheduled!

After being flooded out by the remnants of September’s hurricane and tropical storm, the Lupus Foundation of America has officially re-scheduled the Arizona Walk to End Lupus Now!

The event will be held on Sunday afternoon November 16th, at the same location it was originally planned:  Scottsdale Center for the Arts, 75th and Main Streets, Scottsdale, Arizona.  Registration will begin at 3pm, and the walk will start at 4pm.

If you want to register for the Arizona Walk to End Lupus Now, please visit the updated website new event date and information.  You can sign up new teams or new team members, submit online donations or team fundraising dollars online at www.walktoendlupusnow.org/arizona.

Please join the fight against lupus!

If you are a reader who would like to help, please sign up with me as a virtual walker, and join Toni Grimes’ team like I did.  My previous commitments keep me from being able to attend the walk on the new date, but I am going to participate in-absentia.  You could do this too!  Even if you cannot go the to an actual walk location, or cannot walk the physical course, you can still be a virtual walker in our Arizona event or in a walk event in your community.  Just make sure that people you ask to donate know that you are not going to attend or if you are not physically walking!

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I almost forgot the butterfly! Added in a post update…

 

Or, perhaps it would be awesome if you could make a small donation to support Lupus Adventurer for my virtual walk effort, or my team as a group.  Donations can be made online, or checks may be mailed with a donation form ( click here ) to:  Lupus Foundation of America, Attn: Walk to End Lupus Now – Arizona, 2000 L Street, NW Suite #410, Washington, DC 20036.

Support the AZ Walk to End Lupus Now!

Support the AZ
Walk to End Lupus Now!

Walkers that raise at least $100 are eligible for some great incentive gifts that LFA will provide to walkers either at or after the event.  Last year, my husband and I received T-Shirts and an amazing golf umbrella!  As of this weekend, Arizona Walk to End Lupus Now has received over $64,000 toward the 2014 goal of $100,000.

Click Here to Donate!

Scottsdale, AZ 2014 Lupus Walk Canceled – Monsoon Storm and Flash Floods!

10-26-14 Newsflash Update:

Please see the new post about the rescheduled Arizona Walk to End Lupus Now.  Click Here to read more.

Last Year's AZ Walk

2013 AZ Walk to End Lupus Now

Arizona Walk to End Lupus Now Update – RAINED OUT

The only thing predictable about lupus, is that is it unpredictable!  So it is with the monsoon weather in our warm desert southwest climate! Without so much as consulting the Lupus Foundation of America, the last major monsoon storm of the season hit our area, fueled by left overs of a hurricane moving north into Arizona from the Baja gulf.

The Arizona Monsoon rained on the LFA parade!

After recently struggling with the decision, I resigned from LFA’s Arizona Advisory Council and Walk Committee.  I was losing balance and trying to do more than my type A personality in a type C body could handle without hurting myself.  With grieving the recent loss of my father, plus dealing with the probate of his estate, while also trying to keep up with my health and the professional demands of my law office, I have been in my own “flash flood” of overload.  Something had to go, so I finally determined to step down from my LFA commitments.

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Grandma and kidlets at Grand Canyon

After also making the very difficult decision to opt out of this year’s walk, my husband and I learned we would have visiting out-of-town family all week.

Our son, daughter-in-law and four grandchildren had a sudden opportunity to take a week’s vacation and travel to Phoenix to spend it with us.  Then, we heard later that day that the walk was rained out!  Somehow it softened my sense of conflict a little to know that if I had gone, it wouldn’t have happened anyway.

Now, I am hoping that by the time of the next Arizona walk, my personal life will quiet down a little and I can plan once again to attend!

LFA Letter to Arizona Lupus Community

I think you might really enjoy reading an except of this week’s wonderful letter from Dana Woldrop and Zach Feuerherd and the LFA national office:

Dear Arizona Walk Supporters,

Thank you so much for your support of the Lupus Foundation of America!

As you know, we were forced to cancel the festivities at the Walk to End Lupus Now Arizona event this past Saturday at the Scottsdale Center for the Arts. We were absolutely heartbroken that the day could not continue, but with 75 mph winds, extreme flooding, power outages, and roads closed, safety for you and our volunteers was our first priority. A portion of our walk route was actually underwater!

We want to send out a heartfelt thank you to our many volunteers who braved horrendous conditions to help us set up, protect our materials and tents, and then clean up. Our walk committee absolutely went above and beyond in both planning the event, and working alongside us in miserable weather on Saturday. We were touched and inspired by the many walkers that came to the event site even after it was cancelled, and stayed to help and visit with other walkers.

We realize the need to have a day where Arizona lupus patients and their caregivers can come together to celebrate the work that has been done to raise money for lupus research, increase awareness of lupus, and rally public support for those who suffer from its brutal impact. We are working on a plan for a get together before the end of the year, where we can honor our top fundraisers and committed volunteers,  learn more about the services and resources available, and have fun! We will be in touch with details soon!

We are so thankful for your generosity…as of this morning, we have raised over $63,000.

Maybe next year!!

Arizona Walk to End Lupus Now – Sept. 27, 2014, Scottsdale, AZ

May 3, 2014 Scottsdale, AZ

Scottsdale, Arizona

UPDATE:  SCOTTSDALE, AZ WALK TO END LUPUS NOW WAS RAINED OUT AND WALK COURSE WAS PARTIALLY UNDER FLASH FLOOD WATERS!

The Lupus Foundation of America’s (LFA) 2014 Walk to End Lupus Now for Arizona is coming up in 10 days.  This year the walk will start shortly before sunset, and the evening walk time will allow participants who are sun-sensitive lupus patients to take part without excessive UV exposure.

Although my personal life has interrupted my active participation in LFA activities, I am still excited about the walk but will have to stay home as a “virtual” walker this year, and have joined someone else’s team.  If you are interested in helping, please make a donation to one of the teams or walkers.

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Walk to End Lupus Now

716 donors have donated $39,663.81 so far for the Lupus Foundation of America sponsoring participants of the upcoming walk

If you or someone you know would be interested in coming out to walk at this great event, or even supporting the walkers with your comments or donations, click on the link for more details about how to help or participate:

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

SATURDAY,September 27, 2014

5:00 PM Check-In Opens
5:30 PM Opening Remarks
6:00 PM Walk begins

Scottsdale Center for the Arts
7380 E 2nd Street
Scottsdale, AZ 85251

 

What Comes After Lupus Awareness Month 2014?

Lupus Awareness Month

ToolkitLupus Awareness Month 2014 has now drawn to a close, with a full 31 days of heightened lupus awareness now behind us, and eleven months ahead until Lupus Awareness Month 2015.  Now what?  Does that mean we should stop our efforts and wait for May, 2015 to begin lupus awareness activities again?

Of course not!  So, what comes next?

The Lupus Foundation of America has some outstanding lupus awareness resources that will help you all year to help increase understanding of lupus.  Check out their web page for the Awareness Tool Kit for more things you can use anytime.

In the Tool Kit, there is an outstanding one-page Fact Sheet about Lupus:

Lupus Fact Sheet from LFA 2014

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Lupus Infographics

Lupus Infographics

My favorite all-year components of the Awareness Tool Kit are four Lupus Infographics .  Although designed primarily for use by the press in Lupus Awareness community service messages, each one is suitable for any lupus awareness use, printed on letter size sheet for flyers or as larger posters. However, the Lupus Foundation of America has these conditions on their use:

“The graphics provided below are made available for free download and unrestricted use by bonafide news organizations.  Please credit Lupus Foundation of America, Inc. as the source and, if appropriate, include a link to the LFA website, lupus.org, for additional information about lupus.”

Signs  & Symptoms of Lupus – Infographic

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The Impact of Lupus in America – Infographic

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The Burden of Lupus – Infographic

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Lupus Resources – Infographic

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Lupus and General Health Facebook Chat – Hospital for Special Surgery

HSS Lupus and General Health Updated AnnoucementThis afternoon at work included an unusual break from other duties, by joining a one-hour Facebook chat “Lupus and General Health” that was hosted at 5:30 EST/2:30 PST by the Hospital for Special  Surgery (HHS), Molly’s Fund and the Lupus Foundation of America.  Questions were submitted through reader’s comments after the first HHS welcoming Facebook post, and each of the panel members wrote responsive comments to answer almost most of the questions that were submitted.

My question about Benlysta was answered by Peggy Crow from HHS:

Lupus Adventurer: How might extended Benlysta infusion therapy affect lupus biomarkers, such as ANA titer, etc.?

Peggy Crow: To Lupus Adventurer. That’s a really interesting question. In fact some of my research colleagues and I were just asking ourselves a related question today. When the clinical trials were performed, some biomarker and autoantibody data were tested, but not much. As I recall, some antibody levels decreased a bit, but not all of the antibody types. I doubt that the ANA would disappear. In any case, it’s a great question and one that deserves more research. Understanding effects of a drug on biomarkers can help us understand more about what is going on with the immune system in lupus

Lupus Adventurer:  I ask because my biomarkers are now quiet, after 20 years lupus treatment, with methotrexate, imuran, plaquenil plus clincial trial of Rituxan (amazing) and now almost 3 years of Benlysta. Previous ANA would be in the 1:1300 range, now 1:40. Symptoms are quite moderated again with Benlysta, but I am curious about the correlation between this medication and biomarker activity. Thanks!

Peggy Crow:  L.A. It is really great to hear that you are doing much better than in the past. What I would say about Benlysta and ANAs is that while I doubt that the Benlysta would directly reduce the antibodies enough to bring down the ANA titer as much as you describe, it is certainly possible that you have shown a good therapeutic response to Benlysta and the generally reduced disease activity is being reflected in the lower ANA titer. Benlysta works well in some but not all lupus patients. So it sounds like you are one of the fortunate responders.

Lupus Adventurer: This gives me something to think about and discuss with my doctor. Thank you so much for your response!

th24684V04Click on this Hospital for Special Surgery link to go to the HHS Facebook page and read the all the readers’ questions and the panel’s outstanding responses.  This was an excellent event with a knowledgeable panel and sponsors!

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