November Newsletter

Remember Lupus Colorado On Colorado Gives Day

CGD 2013_MasterMark your calendars and tell your friends! Colorado Gives Day is right around the corner. On Dec. 10 your donation to Lupus Colorado will be leveraged by the Community First Foundation.

For 24 hours, donations will be accepted through the website ColoradoGives.org. Please log on on Dec. 10 and support Lupus Colorado!

“Colorado Gives Day puts Colorado’s non-profits in the forefronts of people’s minds,” said Lupus Colorado Executive Director Debbie Lynch. “It’s an opportunity to reflect on what causes are important to you and give — knowing that your money will be leveraged and the impact of your gift made greater.”

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.

The 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. Colorado Gives Day has raised more than $55 million for Colorado nonprofits since 2007. For more information, visit CommunityFirstFoundation.org.

Wishing Farewell To Lynch, Welcome To Robinson

On December 31, 2013, Lupus Colorado CEO Debbie Lynch will retire.

In accepting her resignation Board Chair Carol Wright noted, “Debbie has done outstanding work. Her tireless efforts on behalf of those with lupus have allowed the organization to grow and to provide critical services to those with lupus and their families. We wish her well in the next phase of her life.”

Of her experience at Lupus Colorado Lynch said, “I had the opportunity to meet many fine people, work with brave clients in all parts of the state and to, hopefully, make a small difference in the lives of those who are afflicted with lupus. It has been a challenge to find the right mix of resources and services. I deeply appreciate the support of the Board of Directors and have great respect for their commitment to the organization and its work. Thank you to everyone for making this opportunity a rewarding experience. Best wishes to all.”

After an extensive search, the Lupus Colorado Board of Directors has hired Inez Robinson to replace Lynch. Robinson will begin her duties on Dec. 2. Inez holds a BA in business Administration and Master’s Degree in Nonprofit Management from Regis University.

“I am excited to hand over operations of Lupus Colorado to Inez,” Lynch said. “Her combination of experiences and enthusiasm will be a perfect mix for keeping the organization focused on its mission and moving forward.”

Robinson’s experiences include working for the National Sports Center for the Disabled in Winter Park, Colorado; Centura St. Anthony Health Foundation; Excelsior Youth Center and The Humane Society of the United States. Most recently she served as the Assistant Vice-President for Development at National Jewish Health.

Robinson is a seasoned professional who brings a wealth of talent and knowledge to the position. She describes herself as a “life-long learner and strategic thinker with a passion to give to a cause I believe in.”

Providers Learn How To Address Racial Disparities When Treating Lupus

The Lupus Research Institute was pleased to attend the presentation at the American College of Rheumatology annual meeting by Dr. Sam Lim, Emory University introducing the Lupus Initiative, a new federal program to educate healthcare professionals about racial disparities in lupus care.

Persisting Racial Disparities Documented by New Data

New findings from the National Lupus Patient Registry also presented at ACR demonstrate disproportionate prevalence of lupus among American Indian and Alaska Native populations that is even greater than previously estimated. These results come on the heels of two newly published papers showing similar disparities among young African American women compared with Caucasians. One of these analyses was led by Dr. Lim in Georgia.

“The Lupus Initiative addresses an important link in the events that compound the health disparities that we continue to see in those suffering with lupus,” says Dr. Lim. “Students, physicians, and health care providers not directly involved in rheumatology practice are or will be the ones most often on the front lines of diagnosing and managing lupus. In our work with the CDC-funded lupus registry, we continue to see the often long and complex course patients must take through the health care system to get appropriate treatment. Improving the education of those health care providers at each of those steps is an opportunity to improve overall lupus care and narrow the gap in health care disparities.”

Alleviating the Disparities

Having confronted racial disparities among minority lupus patients over years of on-the-ground grassroots work in disadvantaged neighborhoods, the LRI and our National Coalition of patient organizations advocated for and secured $4.6 million in congressional funding for the Lupus Initiative.

Dr. Lim added, “Having seen the need to address racial disparities, the Lupus Research Institute and SLE Lupus Foundation helped make the Lupus Initiative possible with their passionate support.”

“In addition to encouraging use of the Lupus Initiative nationwide, the Institute supports direct services in disadvantaged neighborhoods and funds studies on why lupus is more prevalent and severe among minority populations so we can target strategies to better recognize, treat and prevent the disease,”  notes Margaret Dowd, LRI President and CEO and Executive Director of the S.L.E. Lupus Foundation.”

Board Members Honored For Dedication To LC

After many years of dedicated service, three Lupus Colorado Board Members are retiring from the board.

Marty Sheets (watch video) came to the Lupus Colorado Board via Metro Volunteers. She has served for four years and recently moved to the mountains to enjoy retirement with her husband.

“We appreciate her time, her leadership on the board and the Audit Committee and, in particular, with the Colorado Gives Day,” said Board Chair Carol Wright. “She has left a footprint that make filling her shoes a real challenge for those to come.”

brian-photo-1024x674Brian Bates, pictured with his wife and daughter, is retiring from the Lupus Colorado Board of Directors after more than 20 years of service.

Board Member Brian Bates has provided leadership and guidance in the hiring of two executive directors, been an active participant in fundraising events too numerous to count, served as an informal historian and the official keeper of the records in his role as secretary of the board.

“I am not sure how to say thank you to someone who has served on this board for 20, yes 20 years,” Wright said. “Moreover he has an empathic ear that hears the needs of those with lupus and understands the important role the Board plays in ensuring that services are available. His commitment is the subject of organizational lore and we will miss him……..keep in mind we have already thought of ways to keep him involved.”

Howard Hall is also leaving the board. Hall has shown his dedication to Lupus Colorado by remaining on the board even though he transferred out-of-state for his company Bridgestone-Firestone over 18 months ago. Hall maintained his presence on the Board via e-mail conference calls. “We are deeply appreciate of his commitment,” Wright said.

Crane-858x1024

The Cranes donated the proceeds of the sale of their 1967 to Lupus Colorado.

 

Cranes Share Kind And Generous Spirit

Jess and Pat Crane can serve as beacons of inspiration for us all.

The kind couple recently donated the proceeds from the 1967 Mustang they restored, to Lupus Colorado in memory of their daughters Tracy and Kelly.

“It is a special donation, not only because of dollars but because of the generous spirit they shared with us in the process of selling the car,” said Lupus Colorado Executive Director Debbie Lynch.

The car holds many memories for the couple. They bought it brand new for Pat in 1967. The Cranes transported their young daughters in the car and when the girls were teenagers each learned how to drive using the Mustang. Pat joked that the light yellow car was so conspicuous that when the girls were someplace they weren’t supposed to be, someone always spotted the car and knew who was inside.

Sadly, both girls have passed away. One in an accident her senior year of high school, the other died of a lupus-like disease.

“It was real bittersweet to sell the car,” Pat said. “But we weren’t using it anymore. Now someone can drive the car and the money from it can be used to help fund research to find a cure for lupus.”

Giving Thanks, For Lupus!?

sandy-kanowitz-731x1024When I was stumped as to what to write this month, I asked my husband, Art, for suggestions. He had only one: Why I was thankful for having lupus, to fit in with the Thanksgiving holiday. I laughed! Was he kidding? I’d have to pretend and lie, unconvincing and unbelievable. Then the challenging idea began to nudge me, and genuine ideas crept in that I could honestly say were true. So here are some gifts lupus has brought me, that I am truly thankful for, no kidding!

More friends, new friends

I have more good friends and a constant source of new, diverse connections as I meet more people affected by lupus, not to mention their caring families and friends who support them.

Healthier balance in my life

Previously driven by adrenaline and a compulsion to be productive, I now balance activity with rest, employ forethought and planning before projects, and what I accomplish is more important than how much I accomplish. My outcomes are better too, with more planning and less hurried execution.

More appreciation of life

Before lupus, I took life and good health for granted. There is nothing like a chronic illness to teach humility, appreciation, patience, and making the most of what you have left.

Time to reflect

Now that my body cannot speed around, I have more time to spend “in my head”, with my thoughts, searching my soul, contemplating the meaning of life, the universe, and our complex human connections.

More creativity

With lupus, I have completed more poetry and article writing, teaching, designing, creative cooking, repurposing, and decorating than ever before.

Continuation of my career

Once devastated by the end of my nursing and teaching career as I knew it, I have found new ways to use my knowledge, experience and teaching via writing, online forums, and support groups to help others with lupus and a variety of health problems.

Enjoyment of the little things

My roses in bloom, birds at the feeder, growing tomatoes, fresh flowers from the garden, a leisurely meal al fresco, long soaks in the tub, playing with my grandkids, wrapping holiday gifts while cookies bake in the oven, and walking through the fallen leaves hand in hand with my hubby all give me more pleasure than ever before.

Change in values

People, rather than things, are most important to me now. My younger desires to buy and accumulate have given way to simplicity and de-cluttering. Comfort, practicality and design are more important than trends, brands and cost. A purse from Target, if I like it, trumps a brand-name bag any day.

A more giving spirit

I actually enjoy giving more than receiving, unless it is a back or foot massage! Gifts of time, creative effort, given from the heart, matched to the recipient’s personal nature are joyful to give and see in use.

Contentment

The pursuit of happiness has given way to being happy with being content-with my life, my relationships, my limitations, and myself as a whole. Contentment implies a serenity for which I strive.

Acceptance of an imperfect self

I have been a perfectionist my whole life and am finally shedding that heavy cloak of expectations. I am accepting myself, graying hair, rashes and bruises, knobby knuckles, widening waistline, and even the pain and inability to do things I used to do. For every ability I lose, I try to learn a new skill to replace it.

Ability to relax, slow down

As my body slows down, I am embracing the quieter pleasures of life; art, reading, music.

Understanding of love

I have learned that I am worthy of love, in my imperfect state, just as I can truly love others who are burnt, amputated, misshapen, scarred or paralyzed, and realize one’s exterior is virtually transparent when focusing on a person’s inner beauty.

Opportunities to help others

My best distraction from fatigue and pain is the act of helping others through theirs. It is a constant source of inspiration and satisfaction to know that I can lift, ever so much, the burden of others by a simple smile, caring word or gesture, or act of unsolicited kindness in the spirit of giving and hope.

Happy Holidays-2013

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