July Newsletter

Doctor selected as 2nd recipient of Insight Prize

CHICAGO, IL – Bruce Richardson, M.D., Ph.D., of The University of Michigan, has been selected as the second recipient of the Lupus Insight Prize. The award provides $200,000 for use in innovative research on lupus, an unpredictable and sometimes fatal autoimmune disease that affects an estimated 1.5 million Americans.

The prize is a collaborative initiative among the Alliance for Lupus Research (ALR), the Lupus Foundation of America (LFA), and the Lupus Research Institute (LRI) to recognize and honor the achievements of an outstanding investigator in the field, and whose research efforts have a high likelihood of generating further advances in understanding of the causes, biology, treatments, or cure of lupus.

Dr. Richardson received the honor in June at FOCIS 2014, the Annual Meeting of the Federation of Clinical Immunology Societies in Chicago, where scientists will present their findings on lupus and other diseases affecting the immune system.

Many researchers believe that lupus flares are triggered by environmental agents such as ultraviolet light, infections, silica exposure and cigarette smoking as well as certain drugs. How these agents cause lupus flares though, has been unclear. Dr. Richardson discovered that some lupus-causing drugs alter gene expression in normal “helper” lymphocytes, converting them into autoreactive “killer” lymphocytes that attack other cells and cause lupus in mice. He also found the same changes in gene expression in lymphocytes from patients with active lupus, and that many of the environmental agents implicated in lupus, as well as diet, contribute to the changes by altering gene expression. With the award funds, Dr. Richardson will identify the genes affected by these environmental agents, and determine how environmental agents and diet cause these changes in lymphocytes.

“I have dedicated my entire career to solving the problem of lupus. This award will enable me to take one of the most creative and innovative steps in my journey to have an impact on understanding and treating this difficult disease,” said Dr. Richardson in response to the award announcement. “I am tremendously honored to receive this award that has been initiated cooperatively by these three outstanding lupus advocacy and research organizations.”

Dr. Richardson was chosen to receive the Lupus Insight Prize by an independent review committee composed of leading lupus scientific leaders from across the country and representatives of the three lupus organizations. The selection committee based the award on a variety of criteria, including academic achievements, creativity, insight, and potential for future advances that will improve the lives of people with lupus.

Lupus Research Institute’s Scientific Advisory Board member Peter Lipsky, M.D. commented, “The Lupus Insight Prize recognizes the novel insight of Dr. Richardson, who made the unexpected discovery that lupus-causing drugs change gene expression in immune cells. This insight provides a unique opportunity to develop new approaches for potential novel therapies for human lupus.”

Additional information about the Lupus Insight Prize and Dr. Richardson’s work in lupus are available online at www.lupusinsightprize.org.

 

CSU walk for lupus raises awareness and dollars

Lupus Colorado's Michael Sauter helps spread awareness about lupus by speaking to students at Colorado State University.

Lupus Colorado’s Michael Sauter helps spread awareness about lupus by speaking to students at Colorado State University.

Lupus Colorado was proud to be represented at the Colorado State University’s RAMBITION lupus awareness walk by our own Michael Sauter, who manages the Lupus Colorado Facebook page for Teens and was featured in a Living with Lupus profile.

“I truly was honored to be able to speak at the event and I was touched by the amount of support, it was inspiring,” Sauter said.

The event raised about $1,400 in honor of Erica Johnson, the younger sister of CSU track & field student-athlete Ashley Reid. Johnson lost a battle to the disease last October.

Johnson was diagnosed with lupus last summer. After a grueling three-month battle, she passed on Oct. 25, 2013. Reid admired her sister’s courage and strength through it all and said Johnson never lost her sense of humor.

The walk was free of charge, but donations were accepted for Lupus Colorado.

“Though this event stemmed from tragedy, it is comforting to know that Erica’s memory lives on and that more people were made aware of the disease of lupus because of the efforts of her sister, Ashley, Michael Sauter and RAMBITION.”

Watch an inspiring video of the event!

Martha Beck’s Formula for Reversing Bad Fortune (As Applied to Chronic Illness)

By Carie Sherman

Carie ShermanIt’s been a rough couple of months as it relates to my health. Nothing serious–thank goodness–but annoying nonetheless.

I’ve been sick with acute illnesses (shingles and strep throat) as well as the “same old same old” (big-time fatigue and fibro-pain top my complaints). On top of that, it’s summer, and I’m one of those “live for summer” types who hates being stuck inside. I’m so anxious to feel well.

But since I don’t, I’m thankful to have read an article by Martha Beck in the most recent issue of Oprah magazine. She’s a life-coach who uses humor, self-deprecation, and a fine writing style to discuss various topics of enlightenment. This article, Reversal of Bad Fortune, describes how we can use our experiences in one of two ways: As a catalyst for hopelessness or a catalyst for growth.

I can’t recall the last time I felt well physically. And despite my best efforts, it’s wearing on me mentally. Clearly I need help weathering my “accident.” So I decided to use her formula. And though publishing this will make me feel more exposed than Janet Jackson at the Superbowl, I’m sharing it with the hopes it makes someone else feel better, too.

What follows is the example Martha used of her friend who experienced a serious, life-changing car accident as well as my own assessment.

Martha Beck’s Accident Formula

First, write down the pertinent info about your “accident.”

Annette wrote: “I was crossing an intersection when a driver, high on meth, ran a red light and hit me at 70 miles per hour. My car rolled three times and stopped with me hanging upside down. I was able to call my husband, and help came right away.”

I wrote: Just after the birth of my first child and the beginning of a new career as a freelance writer, I was diagnosed with an incurable chronic illness.

Next, isolate the key components of the above statement.

Annette wrote: 1) Intersection. 2) Meth addict. 3) Red light. 4) 70 miles per hour.

I wrote: 1) Birth. 2) Child. 3) Writing career. 4) Diagnosed. 5) Incurable chronic illness.

Third, pretend you are each component of your accident. Use free-association and talk about yourself as if you were the individual component.

Annette’s first word was “intersection.” She said: “I’m a crossroads, a place where Annette can make an important choice.” For the word “driver,” she said “I’m a speeding driver, high on meth. I’m the insanity of humans and of the world. I’m here to teach Annette not to be afraid because fear is useless.” So on and so forth.

I’ll admit it–this part was hard. And I’m not sure if I did it correctly. But here’s what I wrote:

1) Birth. I’m the beginning of a new life. In life there are highs and lows.

2) Child. I am a child. I am a new life. I’m learning to navigate a new world with the help of many wonderful people.

3). Writing career. I’m a writing career. I’m flexible. I’m creative. I’m challenging and fun. I’m an opportunity to learn. I am filled with rejection, yet joyful with acceptance.

4). Diagnosed. I am a diagnosis. I am a suggestion of what is. I am not a definition.

5). Incurable chronic illness. I’m a chronic illness. For Carie, I am not a death sentence. Yet I am difficult and challenging and require change. I am here for the long haul. Carie can learn to live with me or fight me. I require a focus that Carie has never before had. I require Carie to focus on what’s most important.

Finally, read your original description again and incorporate the meaning you’ve created through the free association exercise.

Annette discovered this: “The story of her accident turned out to be a pivotal moment when she could choose to release her fear of death and go on with greater serenity.” Martha says, “Actively choosing to look for meaning in her accident left her happier and more vibrant; seeing it as meaningless would have caused her to contract in terror.”

And here’s what I learned: Even though I’ve spent the better part of this week moping around because I can’t raise my arms above my shoulders, this process helped me remember what’s positive about my illness. (Which is some feat, given I’ve complained to my husband at least once an hour about how miserable I feel.)

My “accident” (aka, my health issues) requires new beginnings. I can choose to fight my new reality, or I can learn to accept it with the help of my support network. It reminds me that life is challenging and constantly changing, and if I hadn’t gotten sick, I might still be focused stuff that’s not important (like an unfulfilling career that would have required far too much time away from my little girl). My life has changed. And during weeks of pain and uncertainty, it’s bound to be frustrating and depressing. But it’s not hopeless.

Thanks, Martha Beck, for the much-needed perspective.

I hope you found some, too.

What helps you? Leave a comment below.

Lupus Research Institute Launches Industry Council to Accelerate New Treatments for Lupus

NEW YORK, NY. – The Lupus Research Institute (LRI) launched the LRI Industry Council, a collaborative initiative founded with 13 leading pharmaceutical and biotechnology companies involved in lupus drug development. The LRI formed the new group to facilitate active collaboration among companies, research leaders, and patient advocates to overcome common obstacles in developing new treatments for lupus.

The need for safer and more effective treatments is critical. Treatment options for lupus are few, and most have serious side effects. Research funded by the LRI and others has identified many promising areas for new drug development currently being pursued by industry. But the complexity and unpredictability of the disease poses many challenges to testing new drugs.  Common difficulties in designing effective clinical trials include measuring responses to treatment and recruiting volunteers as well as identifying those compounds that may work best for specific sub-sets of patients.

“In the past, companies have wrestled with these issues independently which can impede progress,” noted Council Co-Chair and LRI Scientific Advisor Dr. Peter Lipsky.  “The LRI is affording companies the opportunity to work together to find solutions to their common challenges so each can move forward with drug development more quickly and efficiently.”

Founding Members:

  • AbbVie
  • Biogen Idec
  • EMD Serono, Inc.
  • Genentech, A Member of the Roche Group
  • GlaxoSmithKline plc
  • Janssen Research & Development, LLC
  • Eli Lilly and Company
  • MedImmune
  • Nodality
  • Pfizer
  • Sanofi U.S.
  • Teva Pharmaceutical Industries Ltd.
  • UCB

Read more about these efforts.

Lupus Research Institute Launches Industry Council to Accelerate New Treatments for Lupus

NEW YORK, NY. June 10 – The Lupus Research Institute (LRI) launched the LRI Industry Council, a collaborative initiative founded with 13 leading pharmaceutical and biotechnology companies involved in lupus drug development. The LRI formed the new group to facilitate active collaboration among companies, research leaders, and patient advocates to overcome common obstacles in developing new treatments for lupus.

The need for safer and more effective treatments is critical. Treatment options for lupus are few, and most have serious side effects. Research funded by the LRI and others has identified many promising areas for new drug development currently being pursued by industry. But the complexity and unpredictability of the disease poses many challenges to testing new drugs.  Common difficulties in designing effective clinical trials include measuring responses to treatment and recruiting volunteers as well as identifying those compounds that may work best for specific sub-sets of patients.

“In the past, companies have wrestled with these issues independently which can impede progress,” noted Council Co-Chair and LRI Scientific Advisor Dr. Peter Lipsky.  “The LRI is affording companies the opportunity to work together to find solutions to their common challenges so each can move forward with drug development more quickly and efficiently.”

Co-chair Dr. Daniel Wallace of Cedars-Sinai Medical Center commented, “The new Council is already working on several ways to streamline and accelerate clinical trials aiming to bring lupus patients the safer and more effective treatments they need and deserve.”

Founding Members:
AbbVie
Biogen Idec
EMD Serono, Inc.
Genentech, A Member of the Roche Group
GlaxoSmithKline plc
Janssen Research & Development, LLC
Eli Lilly and Company
MedImmune
Nodality
Pfizer
Sanofi U.S.
Teva Pharmaceutical Industries Ltd.
UCB

- See more at: http://www.lupusresearchinstitute.org/lupus-news/2014/06/10/lupus-research-institute-launches-industry-council-accelerate-new-treatments#sthash.ZYG4Fk1O.dpuf

Lupus Lessons from the Robins

sandy-kanowitz-731x1024By Sandy Kanowitz

Art and I have had an uplifting experience for the past month watching Mother Nature in action on our own back patio.

Atop a tall column, protected on two sides with a roof overhead, two mated robins worked endlessly to build a rather crude looking, but sturdy nest, far above harm’s way. It took about five days, after carefully selecting the perfect, safe spot.

It was built twig upon twig, plastered with mud and lined with feathers and other soft debris to cradle the fragile baby blue eggs. Mama seemed to wait patiently for two days, checking the nest, hovering over it, sitting in it, then leaving with a sense of knowing all was ready. Then she sat, practically statue-like for two weeks, never leaving longer than about five minutes, to find food and water and stretch her cramped legs. Papa Robin came to visit, brought her worms, and watched like a sentinel soldier from a nearby tree, occasionally dive bombing or chasing a threat that strayed into nest territory.

He stood guard, fiercely protecting his mate and eggs. Before the hatchlings were even visible to us, we knew they had arrived by the flurry of activity at the nest. Mama and Papa swooped up and down constantly, feeding their babies every five minutes or less. They worked hard from sunup to sundown, then Mama crawled in for the night, like a big fluffy blanket over her featherless brood, while Papa took his post nearby.

This process went on for days before we finally saw little beaks peeking up, waiting for food and chirping with excitement when it came. There were three babies, and the parents worked diligently to keep them safe, warm and fed. When the birds got big and the nest overcrowded, the fledglings fluttered their wings, practicing for their first flight.

We so hoped we would see at least one take off, but they apparently didn’t want an audience for what might have been an awkward moment, stumbling over the edge of the nest and clumsily recovering their balance mid-air. It was amazing to see their instincts at work, guiding every move they made, and their sense of timing, awareness of surroundings, and ability to protect and care for one another.

sandy kanowitz robinI wondered how this experience could help us care for ourselves and our families. There were surely lessons to be learned, and I thought of a few to share with you:

  • Trust your instincts.
  • Listen to your body.
  • Prepare for what’s coming next.
  • Put up your antennae to sense incoming threats.
  • Brace yourself against the wind.
  • Stay in protected areas out of harm’s way.
  • Take cover  from the sun’s rays and the cold rain.
  • Be patient when waiting for something to develop.
  • Take care of yourself while taking care of your mate and children.
  • Know when to work and when to rest.
  • Take time to sleep.
  • Cuddle up with others against the cold.
  • Eat well and at regular intervals.
  • Know when to get out of an uncomfortable situation.
  • Wait for the right time to jump into a new skill, new job, new adventure.
  • Step lightly into new situations to maintain your composure and balance.
  • Have faith that things will proceed as they should if you follow the laws of nature.

Mama and Papa Robin earned my respect and admiration. They did everything right, and had success because of it. We truly can learn from other species when we watch, wait, observe their behavior and apply the principles to our own lives. Once the fledglings took flight, I felt a familiar twang of emptiness. I told my husband  I was reliving my “empty nest syndrome.” He just laughed, but I knew he felt it too.

Upcoming events!

Pineda Walk, Aug. 3

Join us on Sunday, Aug. 3, 2014 for the Fourth Annual 5K Walk to celebrate the life of Lisa Marie Pineda. All proceeds benefit Lupus Colorado, a non-profit dedicated to helping those individuals with lupus and their caregivers through education, advocacy and support.

Understanding Lupus, Sept. 6
This live presentation will cover the diagnosis, treatment and management of patients with systemic lupus erythematosus. This interactive activity will attempt to provide a better understanding lupus for patients, caregivers and the community.

Click on event name for more details.

Lupus Research Institute Launches Industry Council to Accelerate New Treatments for Lupus

NEW YORK, NY. June 10 – The Lupus Research Institute (LRI) launched the LRI Industry Council, a collaborative initiative founded with 13 leading pharmaceutical and biotechnology companies involved in lupus drug development. The LRI formed the new group to facilitate active collaboration among companies, research leaders, and patient advocates to overcome common obstacles in developing new treatments for lupus.

The need for safer and more effective treatments is critical. Treatment options for lupus are few, and most have serious side effects. Research funded by the LRI and others has identified many promising areas for new drug development currently being pursued by industry. But the complexity and unpredictability of the disease poses many challenges to testing new drugs.  Common difficulties in designing effective clinical trials include measuring responses to treatment and recruiting volunteers as well as identifying those compounds that may work best for specific sub-sets of patients.

“In the past, companies have wrestled with these issues independently which can impede progress,” noted Council Co-Chair and LRI Scientific Advisor Dr. Peter Lipsky.  “The LRI is affording companies the opportunity to work together to find solutions to their common challenges so each can move forward with drug development more quickly and efficiently.”

Co-chair Dr. Daniel Wallace of Cedars-Sinai Medical Center commented, “The new Council is already working on several ways to streamline and accelerate clinical trials aiming to bring lupus patients the safer and more effective treatments they need and deserve.”

Founding Members:
AbbVie
Biogen Idec
EMD Serono, Inc.
Genentech, A Member of the Roche Group
GlaxoSmithKline plc
Janssen Research & Development, LLC
Eli Lilly and Company
MedImmune
Nodality
Pfizer
Sanofi U.S.
Teva Pharmaceutical Industries Ltd.
UCB

- See more at: http://www.lupusresearchinstitute.org/lupus-news/2014/06/10/lupus-research-institute-launches-industry-council-accelerate-new-treatments#sthash.ZYG4Fk1O.dpuf

Lupus Research Institute Launches Industry Council to Accelerate New Treatments for Lupus

NEW YORK, NY. June 10 – The Lupus Research Institute (LRI) launched the LRI Industry Council, a collaborative initiative founded with 13 leading pharmaceutical and biotechnology companies involved in lupus drug development. The LRI formed the new group to facilitate active collaboration among companies, research leaders, and patient advocates to overcome common obstacles in developing new treatments for lupus.

The need for safer and more effective treatments is critical. Treatment options for lupus are few, and most have serious side effects. Research funded by the LRI and others has identified many promising areas for new drug development currently being pursued by industry. But the complexity and unpredictability of the disease poses many challenges to testing new drugs.  Common difficulties in designing effective clinical trials include measuring responses to treatment and recruiting volunteers as well as identifying those compounds that may work best for specific sub-sets of patients.

“In the past, companies have wrestled with these issues independently which can impede progress,” noted Council Co-Chair and LRI Scientific Advisor Dr. Peter Lipsky.  “The LRI is affording companies the opportunity to work together to find solutions to their common challenges so each can move forward with drug development more quickly and efficiently.”

Co-chair Dr. Daniel Wallace of Cedars-Sinai Medical Center commented, “The new Council is already working on several ways to streamline and accelerate clinical trials aiming to bring lupus patients the safer and more effective treatments they need and deserve.”

Founding Members:
AbbVie
Biogen Idec
EMD Serono, Inc.
Genentech, A Member of the Roche Group
GlaxoSmithKline plc
Janssen Research & Development, LLC
Eli Lilly and Company
MedImmune
Nodality
Pfizer
Sanofi U.S.
Teva Pharmaceutical Industries Ltd.
UCB

- See more at: http://www.lupusresearchinstitute.org/lupus-news/2014/06/10/lupus-research-institute-launches-industry-council-accelerate-new-treatments#sthash.ZYG4Fk1O.dpuf


May Newsletter

It Starts in the Lab: Why Everyone Wins When You Support Lupus Research

DSC_0768By Carie Sherman

Hooray, hooray, the first of May! Okay, I’m a little late there. But it’s for good reason: Lupus Colorado has updated their website. It looks awesome. Nice work, Team LC!

But, again, hooray! Because it’s May, which means it’s Lupus Awareness Month.

Beautiful month. Terrible disease.

Twenty years ago, while I was putting the finishing touches on my college entrance essays, lupus patients everywhere were receiving grim news: 40 percent of people diagnosed with lupus were NOT expected to live more than 3 years.

Today, more lupus patients than ever can expect to live a normal life span. Yet these facts remain:

There is no cure.

  • More than 1.5 million Americans have it.
  • Even “mild” cases can be debilitating and if not monitored appropriately, life-threatening.
  • Prior to the FDA-approval of Benlysta in 2011, it had been 50 years (!!!) since a new lupus therapy had been introduced.
  • More than 90 percent of people with lupus are women.
  • Women of color are 2-3 times more at risk for lupus than Caucasians.
  • Lupus research is underfunded and poorly understood, despite the disease’s prevalence.

So what can be done about this disease which has no known cause, few medicines, and no cure?

To me, that answer is simple: Support lupus research.

Supporting lupus research is a win for everyone. Why?

  • The incidence of autoimmune disease is rising. The National Institutes of Health estimate, “up to 23.5 million Americans have an autoimmune disorder,” (cancer affects up to 9 million; heart disease = 22 million).
  • An increased understanding of immune system activity can benefit us beyond lupus — people who receive transplants, AIDS patients, cancer patients, and patients of infectious disease are also likely to benefit from increase knowledge.

Help LC Support the Lupus Research Institute (LRI) Harness the “Power of 10” CampaignPower-of-10-Image140

Advance lupus research by getting informed and getting involved. According to the LRI, lupus is considered to be the scientific prototype for autoimmune research because the immune system can attack any part of the body. When scientists unlock lupus, the door may open for some 100 other autoimmune diseases affecting millions of people.

  • Lupus patients, consider joining a clinical trial. Every medication we currently take was approved because of volunteers.
  • Spread awareness. Email 10 friends or post info on your social media platform of choice. I changed my profile pics–did you?
  • Donate. Gifts of any size can make a large impact. I just sent a text that said LUPUS to 50555 to make a $10 donation to the Lupus Research Institute (92 cents of every dollar goes directly to research).

Before my doctor handed me that slip of paper saying “systemic lupus erythematosus,” I knew nothing about lupus. The last few years have been eye-opening to me in terms of the number of people who suffer (often in silence), the misunderstanding of autoimmune disease, the lack of tolerance we as a society have for chronic illness, and the lack of understanding we have about systemic disease. We have a lot to learn. Any donation helps.

Help those with lupus on a limited budget

lupus emergency assistance As a 22-year-old student with lupus who living on her own, Tatiana Huffman doesn’t have a lot of extra money.

“Right now all of my money goes toward paying for school and paying my medical bills,” Huffman said.

“It is very overwhelming and sometimes depressing. Unlike most of my friends I can’t hang out at the mall and shop all because I literally have no money,” Huffman said. “My body physically can’t do the things that most 22 years old are doing. And shopping is not a necessity in my life, whereas my health is my main priority.  At 22, health issues aren’t what most young woman have to deal with.”

Huffman was diagnosed with lupus at 19. Her kidneys are impacted and she experiences high fevers, rashes and a lot of pain.

Lupus Colorado is always looking for ways to expand our reach to better meet the needs of people like Huffman in our state. She recently received assistance from Lupus Colorado.

For more than 40 years, Lupus Colorado has served as a resource for not only the understanding of the signs, symptoms, treatments, and outlook for the disease, but also helping patients to find both emotional and practical support during their times of need.

Through the use of an assistance fund, Lupus Colorado has been able to help individuals and their families affected by lupus with their utility, medical and dental bills, eye glasses, bus passes, and groceries, even purchasing beds for two individuals with lupus who had been sleeping on the floor. Lupus Colorado has tools that can help Coloradans with the disease. But they can’t do it alone. With help from supporters like you, Lupus Colorado can replenish the assistance fund and continue to serve as a resource for individuals and families affected by lupus.

“The Emergency Financial Assistance Fund was such a blessing,” Huffman said. “Right after Gayna called, I immediately said a prayer just thanking God. This was such a blessing. Words cannot even describe how it came at such perfect timing. I am just so grateful.”

Donate to the Emergency Financial Assistance Program here. 

First Class (Pass)

sandy-kanowitz-731x1024On a recent trip, I flew an airline that I rarely fly. The feeling was oddly familiar, like something from the past, when I heard the boarding call for first class.

An uncomfortable cringe crept through me, and I thought, “Really…I thought the class structure was history, passé in our modern thinking of equality. I took my aisle seat in row 2 of coach, “second class,” I bemused, and watched through the silvery sheer curtain separating those 12 “special” passengers from us common folk.

As I sipped cheap wine, for which I was charged, from a generic plastic cup, I saw them receiving complimentary bottled wine in stemware. I didn’t even get peanuts, but first-class was served a full meal on china with real silverware. One attendant catered to them solely, while two attendants scrambled to serve the remaining 138 passengers in coach. An older gentleman even put his hands on the shoulders of the first class attendant and whispered something in her ear, reminiscent of the 60′s and 70′s when women were “Girl Fridays,” to men of stature. I watched with interest but dismay at this decades-old behavior that seemed so inappropriate now. I felt like a “have not,” watching the “haves,” from the outside.

Granted, people have the right to a bigger seat, up front if they want, and other special perks for which they pay extra. But when the announcement was made that the front lavatory was for first class only, it reminded me of the signs on restrooms and restaurants in decades past that prohibited blacks and Jews from entering.

What does this have to do with lupus? There are many different aspects to discrimination, and we who have health problems face our share. We struggle with financial hardships because of inability to work and  higher than usual health care expenses. We face on-the-job discrimination, and 90 percent of us are women, “Girls Sunday through Saturday,” on duty 24/7 for our families, in spite of our illness. Men with lupus are stigmatized because it is not deemed “masculine,” in our society to be ill or not function as the “breadwinner.” We are all first class though in our effort and fortitude to swim upstream against the odds of unpredictable flares, pain, and horrendous fatigue.

How can we eliminate these discriminatory relics from the past, including class delineations, gender and racial inequalities, and even the stigma associated with illness or handicaps? I, for one, am going to send this article to the CEO of unnamed  airline, and continue to support airlines whose passengers are treated equally, with special assistance to the elderly, ill, handicapped, and families with small children. Those airlines where passengers can pay for extras discreetly from any seat, and there is no silvery curtain separating people based on wealth, stature or class. I would prefer our military men and women get special perks for their committed service to maintain our freedoms.

Now that I am stiff from sitting, hurting all over, and have a full bladder, I’ll begin my long journey from row 2 to 26 where a good second class girl can stand in line waiting for the back lavatory. On your next trip, be selective, and have a nice flight!

 

Planning for life

AnitaWCactus (2)Dear Gentle Readers,
I recently took a course on Meaningful Preparation for End of Life Choices.

You might think that this was a course about death. On the contrary, it was a course about life and how you can plan the time you have left to prepare for your death and to live well during the time you have left. For some of you it will be a brief time; for others it will be decades. For some it will be a “good” death; for others it will be a “bad” one. We have within our power the options to decide what we want and to put in place those things that will make the end a meaningful and pleasant experience.

First, we must remember that lupus is a lifelong illness, and no matter how we plan our future, lupus may outsmart us on any given day. We may plan a vacation and find that we are spending those beautiful vacation days in the hospital. Been there, done that. Second, we must always be prepared for a lupus flare. That means that when we plan a trip, we must be ever mindful of the things we must do to plan for a great vacation. That is bring all the pills you need for every day of your trip and a few days extra in case of a trip delay. Get the name of a doctor you can see in the place you are going. Pack lightly and only what you can carry. If you are going on an escorted tour, tell the tour director of your special needs if any. Shorter trips are more doable that longer ones because fatigue is a large part of lupus.

The above might be called our bucket list, the list of places you want to see and the things you want to do in the time you have left. Make that list. Prioritize that list. Start to plan for the first thing on your list. By the way, you can always re-prioritize your list.

lupus colorado planned givingGet your affairs in order. This means that you need to have a will. You need to have a durable medical power of attorney and an Advanced Directive.  An ethical will would be great to have. How to get this done the best way is to go to an attorney that specializes in drafting wills and other legal documents and ask her to help you with your important documents. Wills can always be changed and so can other legal papers, so start with one and think about it for a while. If it suits your needs and wishes, great. If not, you can always change it.

You may also want to put a planned funeral in place so that your children or other heirs do not need to have to deal with this. There are so many things that need to be done that some advanced planning is very helpful.

OK, now that you have done all this, it’s time for some fun. We’ve talked about the end of life, so now let’s talk about between now and then. Hopefully you will have many good days with your lupus at bay. Think about what you would like to do with that time. For me, volunteering is really important. I have gained a lot of knowledge and experience in my working years and I want to share this with some organizations that could use my help.

As you know, I write columns for the Lupus newsletter. I have served on the board of the Lupus Foundation. Now I volunteer for the Arthritis Foundation and give my time and efforts to advocating for issues that are important to people with arthritis and lupus. I go to Congress and ask our Senators and Representatives to consider bills that will give money for Arthritis research and for reducing the amount of money patients have to pay for co-pays on expensive drugs.

You can choose different ways to give back to your community that has helped you along the way  to making lupus easier for you to manage. Lots of places need your help. You can work from home on the telephone. You can work in the office of an organization that needs your help. You can write letters to your Members of Congress asking for their help on issues of importance to you. You can help at your church or synagogue. Even if you can only give a small amount of time, please don’t hesitate to give it.

I’m going to end this column with a poem written by Robert N. Test, American Poet (1926-1994),who assisted in developing organ transplantation.

To Remember Me
Give my sight to the man who has never seen a sunrise, a baby’s face, or love in the eyes of a woman.
Give my heart to a person whose own heart has caused nothing but endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
Give my kidneys to one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.
If you must bury something, let it be my faults, my weaknesses, and all prejudice against my fellow man.
Give my sins to the devil.
Give my soul to God.
If, by chance, you wish to remember me, do it with a kind deed or word to someone who need you. If you do all I have asked, I will live forever.

Until next time,,,

©2014 All rights reserved. Anita Fricklas

Lupus Colorado LRI


March 2014 Newsletter

Colorado lupus patients represented at nation’s capitol

20140325IMG_6065Lupus-Shoo7600_0The voice of lupus resounded throughout the U.S. Capitol as the Lupus Research Institute’s National Coalition (pictured right) visited more than 50 legislators and staff for 2014 Lupus Advocacy Day this month.

Inez Robinson, executive director of Lupus Colorado, was there to represent those in Colorado who live with lupus and to advocate for lupus research and improved care.

Robinson urged those in Colorado to make their voices heard. Those who want more attention given to lupus can become virtual advocates without ever leaving home.

“Help amplify and multiply the impact – the louder we speak, the more Congress will listen,” Robinson said.
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February 2014 Newsletter

Collaboration pushes forward to find treatments for lupus

scientistsBy Lupus Research Institute

Scientists are collaborating to accelerate the process for finding new treatments for lupus and other autoimmune diseases.

The Alliance for Lupus Research (ALR) and the Lupus Research Institute (LRI) are proud to join the National Institutes of Health (NIH)in the Accelerating Medicines Partnership (AMP) recently launched to work on new treatments.

The new $230 million collaboration will harness the collective knowledge and resources among the NIH, biopharmaceutical companies, nonprofit organizations and academic communities. Recognizing that no new targeted therapies exist for severe lupus, the new consortia will work to better understand the disease and uncover new targets for drug development. A total of $41.6 million is allocated specifically to the autoimmune diseases lupus and rheumatoid arthritis.
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