October Newsletter

LC honored by Colorado Healthcare Communicators

lupus-awardsDebbie Lynch (third from right) was honored as Professional of the Year by Colorado Healthcare Communicators. She is supported by (left to right) administrative assistant  Gayna Warren, board member Carol Wright, board member Peggy Gibson, blogger Carie Sherman, (Lynch), special events contractor Rhonda Jackson, communications contractor Michelle Ancell.

Lupus Colorado was honored with three awards at the Colorado Healthcare Communicator’s Gold Leaf Awards in October.

Executive Director Debbie Lynch was named Professional of the Year by the Colorado Healthcare Communicators.

“The board and staff at Lupus Colorado know the outstanding work done by our President and CEO Debbie Lynch,” said Carol Wright, Chair of the Lupus Colorado Board of Directors.  “Her tireless efforts on behalf of Lupus Colorado have allowed the organization to grow and provide critical services to those with lupus and their families.”

For Professional of the Year, the 2013 Gold Leaf Committee and CHC Board of Directors were looking for someone who demonstrated exceptional leadership and skill in facing communication challenges.

Lupus Colorado blogger Carie Sherman was honored with a Silver Leaf Award for sharing her ideas, feelings and struggles on living with a chronic illness.

“Knowing there are so many people who are much sicker than me does make me leery about blogging on this topic,” Sherman wrote. “That’s why I see my role here as facilitator. I’ll share first. Hopefully as this community grows, more people in Colorado will want to talk openly about a disease that remains hush-hush. I encourage your comments and welcome your stories. Chronic illness can be isolating. Right now, someone needs to hear your story.”

Lupus Colorado’s Facebook Page, managed by Michelle Ancell, won a Bronze Leaf Award for its dramatic increase in fans (from about 200 to more than 600) in less than a year; and for its content, providing those with lupus with laughs, supports, resources and information.

Lupus Colorado employs one full time staff member, Lynch, and a part-time administrative assistant. All others work on a contract basis.

Lupus Research Institute Announces New Global Research on Fundamental Causes of Lupus

The  Lupus Research Institute (LRI) announced recipients of its 2013 Distinguished Innovator Award, taking the organization across the globe to support highly innovative studies on two continents. Now the world’s largest private grants in novel lupus research, the LRI Distinguished Innovator Award supports large-scale studies for up to $1 million that can advance the search for a cure by uncovering fundamental causes of lupus.

The 2013 award recipients are David Tarlinton, PhD at The Walter and Eliza Hall Institute of Medical Research, Australia and Kenneth Smith, MD, PhD of University of Cambridge, Great Britain. Dr. Tarlinton will explore new ways to kill the cells responsible for producing autoantibodies that damage tissue and organs in lupus.  Dr. Smith is pursuing an approach to predicting lupus outcome that has potential to reveal new ways to stop lupus progression.

“With the Distinguished Innovator grants, these two outstanding investigators have the opportunity to pursue potential new areas in lupus research that may strike at the root causes of SLE,” noted world-leading immunologist Dr. William Paul, LRI Scientific Advisory Board Chairman and National Academy of Sciences member.  “Drs. Tarlinton and Smith bring exciting new concepts to the causes of lupus; the knowledge emerging from their work has the potential to accelerate the drive toward therapies that can stop and reverse the progression of the disease.”

“The Lupus Research Institute’s global effort confirms our commitment to support the best novel research wherever it originates,” said Margaret Dowd, President and CEO. “In just its second year the Distinguished Innovator Award is gaining worldwide recognition for allowing scientists to pursue the big ideas that can get at the underlying origins of lupus. If we can understand what causes this prototypical autoimmune disease, we can find ways to stop it.”

Getting at the source of autoantibodies

Dr. Tarlinton’s project targets the cells that produce the disease-causing autoantibodies in lupus. The life span of these antibody secreting cells, which are called plasma cells, is normally controlled by a protein inside them called Lyn. In lupus, harmful plasma cells survive, possibly due to abnormally low levels of Lyn. Dr. Tarlinton will search for drug candidates that can remove these plasma cells by mimicking the effects of Lyn.

Potential for personalized treatment

Dr. Smith’s group has discovered that lupus patients who develop more severe disease have a distinctive pattern of genes turned on in their white blood cells. He and his group will investigate whether this gene pattern can be used as a practical test for long-term lupus prognosis. Such a predictive test would allow for safer and more effective personalized treatment. They will also explore what causes this gene pattern, in the search for new treatment strategies.

LC continues work with Energy Outreach Assistance

EOC_logo_tagSMLupus Colorado was awarded a $13,000 grant from Energy Outreach Colorado to distribute to those who need financial assistance to pay their utility bills.

Energy Outreach Colorado distributes energy bill payment assistance funding through a statewide network of about 125 community-based organizations. It is a private non-profit agency that raises heating assistance funds from individuals and organizations. Lupus Colorado is one of the community-based organizations that has been selected to provide assistance.

“This program has been a lifesaver for many people whose income is limited because they suffer from lupus,” Lynch said. “We are proud to serve as a partner.”

If you, or someone you know, is in need of financial assistance for their energy bills, please contactLupus Colorado.

Letting go

Bysandy-kanowitz-731x1024 Sandra Kanowitz, MSN

As we age and mature, a natural tendency to sort out life’s priorities occurs for most of us. One of the priorities I believe is essential is letting go of the “what if, why me, if only I had”… kind of rhetoric that plagues our mental well being.

I have been struggling to practice “letting go” for years, and am still troubled by a tendency to want to fight what is (my lupus), yearn for what was (healthy times), and  worry about what will be. Living with chronic illness provides plenty of fodder for practice, and I hope you will join me in the goal of letting go. Here are some thoughts to facilitate that work:

  • Try to identify what can be changed and what cannot. The things that cannot be changed are on your “let go” list. Focus your energy on things that can be changed to improve your quality of life.
  • Lay blame to rest. Most of our problems are the fault of no one, including ourselves, especially our lupus. There is nothing that could have prevented it and it is not a disease caused by lifestyle.
  • Put the past in the past and focus on now and the future. We all mourn for our lost abilities and healthier times, and the lifestyle that went with it. Harboring relentless anger and sadness about that will just ensure an unhappy future.
  • Try to move toward acceptance of yourself, your abilities, virtues, and set goals to achieve with the tools you currently have. You are still the same person, with an illness, as you were before. Your limitations now do not cancel out your remaining abilities to be productive and happy.
  • Forgive the people who have dismissed you, not believed you, and minimized your situation. They probably didn’t mean any harm, they just didn’t know and understand the nature of our problems. Carrying around resentments adds to our already heavy burden.  Focus on educating others about lupus/invisible illness.
  • Let go of the tendency to be a passive recipient of your health care. The practice of medicine has changed, and patients must take an active role in their care. Learn, research, discuss, and when appropriate, make suggestions or pose questions to your health care providers so you get the best care possible.
  • Ditch the “half empty” mentality when looking at yourself and your life. A positive outlook goes a long way in helping us feel better, and certainly makes us more likable to others. Negativity repels others and in turn, leaves us isolated and alone in dealing with our problems.
  • When a new limitation crops up, replace it with something new. For example, if you can no longer jog, take up swimming or bicycling so you can let go of the disappointment around your lost activity.
  • Get into problem solving mode. When a difficulty arises, let go of the bemoaning tendency and ask yourself, “What can I do to remedy this situation or make it better?” Taking an active problem solving stance will empower you and make you feel more in control and less like a victim.
  • Celebrate whenever you can your accomplishments. Achievements are hard-won when battling a chronic disease, and every accomplishment should be acknowledged and rewarded.
  • “Let go and let God” is a worthwhile motto if religion or spirituality is part of your life. Many people get comfort in believing their higher power is watching over them and helping out. Turning over problems to “someone else” can take some of the weight off our shoulders mentally and give us peace of mind.

Save the Date – Dec. 10 is Colorado Gives Day

CGD 2013_MasterMark your calendars and tell your friends! Once again, Lupus Colorado is taking part in Colorado Gives Day.

Colorado Gives Day is an online giving initiative created by the Community First Foundation and supported by Colorado’s largest locally owned bank and corporate partner FirstBank. It is scheduled this year for Dec. 10.

Colorado Gives Day takes place during a 24-hour period. Donations will be accepted through the website ColoradoGives.org, with a goal to inspire and unite Coloradans in supporting local nonprofits. Please log on on Dec. 10 and support Lupus Colorado!

Community First Foundation has been serving the community for more than 35 years, helping donors and nonprofits come together to improve quality of life in the Denver metro area. It funds community programs, supports the services of nonprofit organizations, and assists individuals with charitable giving. The Foundation is also known for its innovative programs such as ColoradoGives.org, an online giving resource that has raised more than $55 million for Colorado nonprofits since 2007 and is the platform for Colorado Gives Day. For more information, visitCommunityFirstFoundation.org.

Sharing dreams for lupus

AnitaWCactus (2)Dear Gentle Readers,

I have a dream …In recent months we celebrated the life and wisdom of Rev. Martin Luther King, Jr. I have visited his memorial in Atlanta and it is meaningful and thoughtful. Last Thanksgiving, our whole family visited there and everyone said it was so touching and spoke to their hearts. So it occurred to me that we all have dreams – dreams about our lives, our communities, our families. Let me tell you some of mine.

I have a dream – that researchers will find a cause and cure for lupus in my lifetime.

I have a dream – that researchers will find a cause and cure for juvenile arthritis in my lifetime.

I have a dream – that one day I will get out of bed in the morning and nothing will hurt.

I have a dream – that I can walk as long and as far as I want and never have to stop because I have pain.

I have a dream – that I will no longer need caregivers because I can do things myself.

I have a dream – that people who love me will be relieved to know that their energizing thoughts and healing prayers worked.

I have a dream – that I will have more good days than bad days, and you will too.

I have a dream – that people in our world will help each other all the time and not just when disaster strikes.

I have a dream – that no one, anywhere, will go to bed hungry.

I have a dream – that we really will leave this world a better place than when we found it.

What is your dream?

Until next time . . . .

©2013 Anita Fricklas  All Rights Reserved

Lupus Colorado wins $500 from Citywide Banks

charity-imageThanks to Lupus Colorado supporters who voted for us in Citywide Banks Charity Hand-Up Contest.

The South Metro Professional Firefighters Foundation won the contest’s $5,000 by garnering 27 percent of the votes.

Lupus Colorado came in fourth with 11 percent of the votes.

“We are grateful  those those tho took a minute to cast their votes,” said Lupus Colorado Executive Director Debbie Lynch. “In addition, Citywide Banks deserve much credit for acting as an amazing community partner. Not only are they giving dollars to local non-profits, but they are also raising awareness of all of these good causes.”

In September 2011, the bank hosted its first contest through Facebook aiming to give an extra “hand-up” to local charities — to raise awareness about the great work and ongoing needs of local charities around metro Denver. It was a success, and has grown into a quarterly campaign that exposes nominated charities to tens of thousands of new people. Regardless of who wins the vote, all the nominated charities will get valuable exposure for their work and ongoing needs.

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