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.

“We are very pleased to see the NIH build upon the deep foundation of novel scientific discovery that the lupus research organizations have accomplished over the past decade,” said Margaret Dowd, President and CEO of the Lupus Research Institute. “By investing in early-stage, high-risk ideas, we have supported innovation in fundamental understanding of the disease and successfully identified a diverse range of new pathways and targets in lupus. Now the NIH partnership will propel progress further with tremendous investment and collaboration across all sectors.”

Alliance for Lupus Research President Kenneth M. Farber commented, “The large-scale approach of the AMP program is necessary to critically assess which of the many novel pathways and targets implicated in lupus show the greatest promise for the development of new therapeutics.”

As members of the consortium steering committee for lupus and rheumatoid arthritis, LRI and ALR will have an active role in setting the research agenda and assessing progress.

Visit the Lupus Research Institute website for updates.

 

Non-Profit Work Drives Robinson’s Passion For Making A Difference

Inez Robinson learned early in her career that her passion was working for non-profits.

She was employed at a certificated public accountants’ firm as a liaison between the government contracts and the firm. Two days after tax season she resigned and that was the last for-profit for which she worked.

Her vast non-profit experience includes 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.

“Anyone who works for a nonprofit understands how fulfilling it is to be able to work using your heart and your head,” Robinson said.

Now Robinson is Executive Director of Lupus Colorado. She’s been at the job just more than two months now and is excited to see what the year brings.

“It’s an important organization that offers support and resources to those who live with lupus,” Robinson said.

She explained that Lupus Colorado is unique from other non-profits she’s worked for in that the organization services individuals who are in a situation that is lifelong, compared to someone who is experiencing a temporary crisis or setback.

“We can intervene, we can provide support, we can provide resources, but we are working with people who are in a situation that is lifelong,” she said. “It’s not just a one-time touch. We need to figure out how to serve people throughout their lives.”

To help understand what lupus sufferers need, Robinson plans to conduct a needs assessment this year.

“I look forward to working with people who are already affiliated with this organization and bringing in new partners,” she said.

 

It’s Up To You To Stop Me From Blathering. Please, Take My Survey

Carie ShermanBy Carie Sherman

It’s been too long, but I’m back. And I need your help. First, a quick update.

Did you know Lupus Colorado has a new executive director? We said goodbye to Debbie Lynch in 2013, who recently retired after many years at the helm of LC. She’ll be greatly missed, but she’s left us all in great hands. I recently met with our new director, Inez Robinson. There’s one thing I know for sure: 2014 will be an exciting year.

Second, I’ll continue to write this blog. We’ve already built a nice community, but let’s be clear: This blog is about you. So think of me as your own personal roving reporter. What information can I provide to that would make living with lupus easier for you?

It’s easy to leave feedback. It takes five minutes and it’ll give me peace of mind that my babbling is of interest and helpful.

Take Carie’s survey!

Together, let’s continue building a community of people affected by lupus in Colorado and beyond. My goal is to bring together patients, caregivers, community members, and even health care providers, in the interest of making life with a chronic illness a little bit better.

 

Time And Energy Management Key When You Live With Lupus

By Sandy Kanowitz

We’ve had more than a month to practice our New Year’s Resolutions. How are you doing on yours? sandy-kanowitz-731x1024

Making fresh starts, changing our lives for the better, we lupus sufferers need more help than most in making our lives more efficient. So whether your New Year’s Resolutions are now habits or you can’t even remember what your resolutions were — it’s not too late to make some positive changes in your life!

Mornings During your first half hour of wake up time, with coffee in hand, make a list of “have to’s” and “want to’s” for the day. List the “have to’s” in order of priority first, then do the same with the want to’s.” Look over those that require driving (errands), and map them in order to save time and gas. Use drive-up whenever possible for banking, drugstores, dry cleaners, etc.

Consider the weather and save your outdoor activities when the weather will be most comfortable for you. Snow storm coming in afternoon? Get groceries in a.m.? Freezing this a.m.? Do your running around after it warms up a bit.

Plan dinner and get meat out of the freezer. Do as much food prep in the morning as you can, so fixing dinner will be easier when you are dead tired from working all day. Whenever possible, chop for two or three meals at once to save on clean-up time. Many pre-cut veggies will last in the refrigerator for one to two days. Make double or triple amounts of entrees and freeze for a low energy, busy day. Make use of cooking techniques that do not require standing, watching, stirring, etc., such as crockpot cooking, baking, roasting and simmering. Use spray oil, paper lining, foil, etc., in ways to minimize clean-up. Use lightweight mixing bowls, pots and pans, and dishes to save your energy expenditure while cooking and cleaning up.

Food and water! Keep yourself fed and hydrated while running errands. Thirst and hunger will make your energy take a nose dive, so pack a drink and snack, or keep a box full of goodies in your car to keep up your nutrition.

Ask for help and delegate duties within the family. You can find online lists of household chores that are manageable for children of all ages. Are you doing everything for them? Can they do more for themselves and pitch in for the family benefit? Chores teach kids not only how to do things, but a sense of responsibility, belonging, self-worth, accomplishment and pride.

Control freak? Give up some control. Do you do it all yourself because no one else does it as well? Teach others your techniques and tricks, and let them try. They learn and you lessen your work load.

Adapt the phrase “good enough.” Some things do not require perfection. Be selective about your expectations of perfection and let some other things go and be “good enough.”

Communicate Try a new habit of a weekly family meeting. We do this on Sunday morning before the weekly activities start. Go over calendars, appointments, special events, special tasks, communication needs, and decide who is doing what and when. Leave extra time before deadlines for unanticipated glitches. Make sure everyone is helping out so it isn’t all on your shoulders.

Get organized! Get organized, simplify, de-clutter, label items. This is my biggest challenge, as lupus has caused ADD.

I spend too much time and energy looking for things. Give everything a home and put it back when done. Label items so everyone knows where they go. Get rid of excess. Use color coding. Reduce paper by computerizing more information. If you don’t know where to begin, ask a friend to help you. Peter Walsh has great ideas for organizing and clutter control. IKEA specializes in small space storage with inexpensive, clever designs that look great too.

Have fun and try incorporating some of these ideas in your New Year’s resolutions! The days are getting longer, so more light equals more energy!

 

Celebrate Those You Love — And Who Love You!

AnitaWCactus (2)Dear Gentle Readers,

It’s almost Valentine’s Day, a day we celebrate love – love we have, love we need, love we give.

I wrote this poem for my husband last year to let him know that he is the reason I can live with lupus as well as I can. I can get up in the morning and see sunshine, not darkness. I can look forward to my day knowing that he is beside me. I am aware that not everyone has a partner to share the ups and downs of having lupus. But if you are lucky enough to have someone to share your life with, let that person know how much you appreciate him/her – especially on this day. That’s why I am sharing this poem with all of you to let you know that we all need each other to make it work – to hold someone’s hand when they are hurting, to bring a meal to a shut-in, to babysit for a while so the person can get some rest.

 

I HAVE NO POWER BUT LOVE

I have no power but love. I cannot move mountains; I cannot stop trains. I look out over the tops of the houses and what do I see A vast expanse of world, created by others,

Not mine. I had no power but love, Until you took my hand and held it tight. The force of your energy sparked within me. It energized my power; it reinforced my meaning. Together we can move mountains. Together we can stop trains. 

Together we can create a world that is ours. A world to retreat to, a world to shine in. I have no power but love. But love, with you holding my hand, has power, The power to greet each day with joy and with wonder With energy and with anticipation With hope and with renewal –the power of love.

Until next time …

©2014 All rights reserved. Anita Fricklas

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