If Christmas Happened Now...

I keep watching this over and over and over again. Beautifully captures the story of Christmas for today's culture.




Frame not wide enough? See it here.

CFS Blood Donation Ban and More

Press Release:

CORAL GABLES, FL, DECEMBER 6, 2010 – In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life.  CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide.  

ME/CFS first gained national attention amidst the AIDS epidemic in the early l980s. As early as l99l, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.

“This can happen to anyone,” said Sita Gange Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now.”

A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7 % of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.

“The NIAID, the national institute responsible for infectious disease research, has yet to fund outside grants for XMRV research in ME/CFS,” explains Annette Whittemore, President of WPI. “WPI has had its last six XMRV-related grant proposals turned down; despite the fact that researchers have shown XMRV is transmissible and infectious.” 

MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million).  Because ME/CFS is not a women’s disease and is associated with infectious pathogens, the patients are asking that XMRV-related diseases be moved from the Office of Women’s Health to the NIAID.  Patients are also seeking support for clinical trials of drugs shown to be effective against XMRV and other infectious organisms found in those with ME/CFS.

For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/ .



About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc.™, Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.

CONTACT:
Sita Gange Harrison/Tina Tidmore
561-313-1835
205-680-6890
Media@mcwpa.org

This on the heels of last week's Red Cross announcement that they will be banning blood donations from people diagnosed with CFS. While Red Cross isn't specifically saying they are concerned about XMRV in the blood supply, it is logical to conclude this is their reasoning behind such a ban, following the lead of several other countries who have blocked blood donation from Chronic Fatigue Syndrome patients due to clean blood supply concerns.

Birthday Presents for Jesus

Our family hasn't abandoned the tradition of gift exchanging, but I love these reminders to focus on Whose birthday is being celebrated this Christmas:
When the Gifts Are All for Him
Don't miss out on the powerful video at the end. It could change your life!
After our 10-year-old watched this he asked, "Mom, can we invite Mr. Ray and Miss Cora [a homeless couple we met on a street corner a few weeks ago] home for Christmas?"
Hmmm. God, am I up to the challenge of truly being Your hands? Your heart?
We won't be in town for Christmas this year, but what can we do for Ray and Cora, and thus for Christ, for His birthday???

Did the Baby Die?

Wow!!!
Powerful story at A Holy Experience entitled, The Great Give Away.
Go. Read. Wipe tears.
Be challenged and refreshed as we prepare our hearts to count down to Christmas.

DaySping 30% discount code

I've just signed up as an affiliate with DaySpring. It cost me nothing to join the program and I'm a frequent customer there and already share my finds with friends and family, so I decided I might as well earn a little money for doing what I'm already doing. :)
If you love DaySpring as much as I do, you won't want to miss this coupon that expires tonight! Shop the DaySpring Super Sale and get 30% off with the biggest coupon of the year! Expires Nov. 30th.

After Infertility "Normal"

I so appreciate the reminders from Russell Moore, an after-infertility dad, about how normal it is to get frustrated in parenting, even when this is what we begged and prayed for. http://www.crosswalk.com/blogs/russellmoore/11641846/ Good reminder to not take my "normal" for granted. :)

To Write

One of the many blogs I follow is written by Lysa TerKeurst. She posted something recently that's playing over and over in my mind. As background I guess you should know that as much as I love to write, and am [GULP!] actually learning to embrace public speaking when given the opportunity, I often struggle to know what to share. What do I say? What's of value? What can I give that will make your time investment in my words be worth your while?

When I find myself voicing these questions, Mom's advice is always simply, "Just tell your story, Sweetheart." And I do. But sometimes it seems awfully self-centered. And I wonder if this is really the way to go about using the platform God's built for me. I don't want it to be "all about me," but since one of the key rules for writers is "write what you know" or "write from experience" I've never figured out a better way to go about it.

With this in mind, it was a huge breath of relief, an "Ah-ha!" moment, to read Lysa's recent thoughts:

I’m more convinced than ever people don’t care to hear about our Jesus these days until they meet the reality of Jesus in our lives.
Don’t skim past that last sentence too quickly.  Our history with Jesus is our best salvation message.
If you look at the word ‘history,’ it’s interesting to break it in half and see the words, “His story.”  That’s the thing this world is dying to hear.  People can debate and argue theology all day long but they can’t argue what Jesus has done personally in our lives.  Truth lived out is the best sermon.

She had more inspiring thoughts to share, but these are the words the lept into my soul.

So that's the trick. That's what makes the difference between how telling my story makes it "all about me" and why telling my story can instead point someone to Him. I've heard it said many times, "You are the only Bible some people will ever read" and agree with the statement, but somehow never quite made the bridge to how "just telling my story" was anything other than narcissistic. Having it worded by Lysa that, "people don’t care to hear about our Jesus these days until they meet the reality of Jesus in our lives" just made it "click" for me, that I'm right where God has me, living my life, telling my story, praying to be used by Him through it all. :)

A sweet quote from the facebook page of A Friend in the Storm seems to go along with all this. "GRACE is more than a comfort. It seasons our speech, fragrances our lives, & explains our eternity." 

Lord Jesus, You are the author of my life. Please live and work in and through me, letting Your story speak grace through my every word. I am nothing without You. Let me be a light to shine Your love for hurting people, leading the broken to Your heart!