I’m a novice blogger ,  in fact, this is my first-ever post , so please bear with me and forgive any inadvertent breaches of blog protocol! I’m Dan Kiefer and I’m one of one-and-a-half million Americans suffering from Parkinson’s disease. I’m 44 years old, and I’ve been fighting this disease for the last 9 years. Parkinson’s is a strong and relentless adversary, and I need stem cell research and the hope it provides in my corner for the duration of the fight. Some days are better than others. Some years have been better than others. But for now, I’m on a "good" regimen of exercise and pills " some 20 of them a day ", and though sometimes I’m stiff and shaky for hours at a time, I’m mostly able to get around, slowly. My voice, my handwriting, my sleep, my ability to walk and to drive, and so many other aspects of my daily life have been affected.

About two years ago, I left my job as an attorney. Though I had expected to retire from work at some point, I certainly didn’t expect that day to arrive so soon. I miss working. I miss providing for my family, which about 20 months ago became a little bit bigger, and infinitely better — when our daughter Lucy was born. There are benefits to having the disease and not working. The most important one, by far, is that I’m able to spend a lot of time with my daughter, and be there as she learns to walk, talk and say "no!" over and over and over again. I take Lucy to the playground; we read lots of books together; we play in the yard. I’ve learned to be so grateful for this, and not to take any of it for granted. My time with her is precious, and she is truly a miracle. And from a purely selfish perspective, when I’m with her I’m truly living in the moment; she takes me "out of my own head," and pushes aside negative thoughts and fears about Parkinson’s disease and about my future and my family’s future. She brings me an endless amount of joy.

This is not to say that being a Parkinsonian dad is a picnic. There are very real and immediate downsides to the situation, which affect my ability to be the father I’d like to be. For instance, first thing in the morning, I can’t lift her out of her crib and give her a bottle of milk, as I’m rendered essentially immobile until my first set of pills kicks in. I can’t always hold her, play with her, or react quickly enough to stop her from jumping off a chair, or using her baby stroller to chase the dog around the house (at top speed!) And there are other interesting, unpredictable things that happen: one of Lucy’s phrases now is "daddy pills," which "appropriately" she uses when she sees me taking my pills or sees my huge weekly pillbox in the bathroom. Like many toddlers, she is a gifted mimic, and when I’m doing my physical therapy exercises , some of which involve my walking like someone from Monty Python’s "ministry of silly walks", she follows and imitates me, and we both laugh.

Scientists and researchers tell us that embryonic stem cell research holds tremendous promise, not just for treating or curing Parkinson’s, but also for diabetes, Alzheimer’s and Multiple Sclerosis, to name a few. Unfortunately, the federal government has effectively stopped funding embryonic stem cell research. (Read on …)

Already grassroots stem cell research activists can give their support to a letter from Diane Feinstein to President Bush requesting him to expand the current Stem Cell Research Policy to allow funding for more embryonic stem cell lines. Currently only 11 old embryonic stem cell lines are in use in federally funded research due to the severe restrictions placed on this research by President Bush back in 2001.

Here is the petition for you to sign:
http://feinstein.senate.gov/stemcell.html

President George W. Bush
1600 Pennsylvania Avenue, NW
Washington, DC 20500

Dear Mr. President:

Embryonic stem cell research has the potential to help more than 100 million Americans who have deadly and disabling diseases and conditions such as cancer, heart disease, diabetes, Parkinson’s, Alzheimer’s, multiple sclerosis, spinal cord injury, and many others.

However, the limits on the lines of stem cells available for Federally funded research has seriously hindered researchers’ ability to help treat these diseases and conditions. Since the policy was announced on August 9, 2001, the number of viable embryonic stem cell lines available to researchers who receive Federal funding has plummeted from 78 to 19.

This research is immensely important and should be fully explored so that we are able to do as much as possible to find cures and alleviate human suffering. We ask that you expand the current policy so that Federal funds will be available for more embryonic stem cell lines.

Thank you for your consideration.
Sincerely,

During the holidays, most folks are busy with family and friends, crowding the shopping malls looking for the perfect gift, searching for a special way to say, “Thank you” to all the people who help, who share, who comfort, who make you smile.

I said my ‘thank yous’ during Thanksgiving week, so I thought this week I’d share my wish list. It’s pretty small, actually. Since being diagnosed with M.S. more than 25 years ago, I’ve learned to be somewhat flexible, to always have “plan B” figured out when my first choice – “plan A” -  wasn’t going to be possible. For example: Can’t keep living in a three story house, OK, move to a ranch. Can’t use a cane, get a walker. Not enough balance to use the walker, get a scooter, etc. All has been manageable – so far. While closely reading M.S. research articles over the years, I often noticed words like “some improvement” but never saw the word “regenerate” and certainly not the gold standard “cure”. But then stem cell research developments began to be described in the press, and I quickly recognized that this was something different. And not just for M.S. but for science, for progress, for all of us.

So what’s on my wish list? Just one thing: a request. “Please get out of the way!” and let the exploration proceed, allow the knowledge to unfold, the treatments to be designed. “Get out of the way!”, and demonstrate some respect for those of us tottering at the edge of the abyss; stop the constant distortions of the facts. For example, (Read on …)

SCAN AND THE BETTER IDEA

“Breathes there a man with soul so dead, who never to himself has said, this is my own, my native land…” – Sir Walter Scott

Some thoughts, like love of country, are universal. Surely everybody in the regenerative medicine movement at one time or another has thought:

There are one hundred million of us: Americans with an incurable disease or disability, who might benefit from embryonic stem cell research and therapies. If we act together, no short-sighted politician in the world could oppose our will.

But how to rally our 100,000,000 potential patient advocates? There’s the problem.

Usually, the idea goes something like this: (Read on …)

(Read on …)

 The year 2006 has been a banner year for our advocacy efforts. Our successes in advancing pro-research legislation and candidates came about only because so many advocates worked so diligently. Let’s review the history as we prepare to advance embryonic stem cell research in 2007…

(Read on …)

There are many heroes among us — advocacy "champions" who dedicated themselves to our cause. Perhaps you know of someone who made important contributions in 2006. We’re soliciting nominations from the advocacy community. So if you know someone who has made a difference for us all in this journey, please send me (idelle@stemcellaction.org) their name, contact information, a brief summary of their contribution, and what especially has impressed you. We will select the top 5, 10, or 25 — depending on how many nominations we receive — and then acknowledge them in this blog, as well as in Stem Cell Action Network’s weekly Newsletter.

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