thank you, Ellen, for your kindness.  I would do anything I could for the PD 
community

Ray

Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
[log in to unmask]

--------------------------------------------------
From: "Ellen Luhman" <[log in to unmask]>
Sent: Sunday, February 01, 2009 3:36 AM
To: <[log in to unmask]>
Subject: Re: Three Women Warriors

> Thank you for all your work, Ray.
>
> Ellen
>
>
>
>
>
>
>
> -----Original Message-----
> From: rayilynlee <[log in to unmask]>
> To: [log in to unmask]
> Sent: Sat, 31 Jan 2009 5:02 am
> Subject: Three Women Warriors
>
>
>
>
>
>
>
>
>
> My friend Don Reed had this in Daily Kos last month.  He is key player in
> Prop 71 for California.  The government recently gave the OK to the first
> human embryonic stem cell trials in California which  target spinal cord
> injuries.  Don's son, Roman, has long been paralyzed due to spinal cord
> injury.
>
>
> Three Women Warriors
>
> by diverdonreed
>
> Tue Dec 30, 2008 at 03:40:43 AM PST
>
> THREE WOMEN WARRIORS
>
> "...and the female of the species is more deadly than the male..."
>
> -Rudyard Kipling
>
> I don't know about the "deadly" part, but I have been fortunate indeed to
> have worked with a great many strong women: Gloria, of course, who 
> brightens
> my life every day with her power and wisdom; Karen Miner, whose endless
> willingness to work is a continual nudge to anyone tempted to get lazy; 
> and
> my sister Patty, gone now, but an early pioneer in the computer science
> field, and a person who could always find the good in every one.
>
> Today, I would like to give a small shout-out to three dedicated 
> advocates:
> film-maker Jessica Gerstle, martial artist Jennifer Longdon, and Rayilyn
> Brown, fighter extraordinaire.
>
>
> The movie-maker first: here is your official invitation from Jessica
> Gerstle.
>
> After a
> bicycle accident left Dr. Claude Gerstle paralyzed from the neck
> down, he and his daughter Jessica discover hope in stem cell research. The
> Accidental Advocate is a wheelchair odyssey of a father and daughter
> tracking down the leading stem cell scientists, politicians, crusaders and
> nay-sayers, in order to understand the promise of stem cell research and 
> why
> a political quagmire is stalling a cure.
>
> The Director of the film will be in attendance for a Q&A after the
> screening.
>
> The Film premiered at the Democratic and Republican Conventions as part of
> the Impact Film Festival. You can read more about the film at
> www.theaccidentaladvocate.com
>
> *Tickets will be available through the theatre website after January 5th
>
> Dear Don,
>
> Happy Holidays!
>
> I have organized a roll out of The Accidental Advocate, my documentary 
> about
> the stem cell debate, which I am calling "One Night Only!"
>
> This January, for One Night Only, The Accidental Advocate will be shown in
> theaters across the country and at rehabilitation hospitals. As you know,
> President-elect Obama has indicated that advancing stem cell research will
> be a priority for his Administration, and we expect him to act quickly
> through an Executive Order and Congressional legislation after the
> inauguration. But this does not inform the public about the issues and 
> will
> certainly re-ignite the controversy. The Accidental Advocate's nationwide
> coordinated screening is timed to engage audiences and policymakers to
> suppo
> rt effective stem cell policy, and to pre-emptively refute the
> opposition's inflammatory rhetoric and attempts to confuse the public.
>
> Showing the film in 15 cities at once will add to the informed debate 
> about
> this country's emerging healthcare crisis and the future of regenerative
> medicine. My goal is to pack the theaters with politically intelligent
> audiences including patient advocates, scientists, politicians, 
> researchers,
> doctors, and religious leaders, who are familiar with grassroots advocacy
> and the stem cell debate. Please share this announcement with the local
> chapters of disease organizations like JDRF, ALZ, PAN or Hadassah or
> research and medical hospitals that would send out the press release and
> invite. The national headquarters have already put me in touch with many 
> of
> the chapter presidents.
>
> The kick off screening will be on January 12th in Washington D.C. followed
> by a discussion panel which I will videotape and make available to host on
> the web. Most of the other screenings will be on the same night, January
> 14th, 2009 at 7pm. The other cities are: Atlanta, Baltimore, Boston,
> Chicago, Denver, Detroit, Houston, LA, Minneapolis, St. Louis, San Diego,
> Santa Fe, Seattle, Washington D.C.
>
> Given the current economic climate, I am not asking for a donation to help
> us put on the event, but tickets for the screening will be $10, and will 
> go
> towards the costs of the screening. The tickets will be purchased directly
> through the Landmark Theatre website and at20the box office after January
> 5th.
>
> I hope you will be able to help me publicize the screenings. Let me also
> know if you can help me reach out to press contacts to build interest in
> this event.  I can provide a press kit after the holidays, but would like 
> to
> begin the process of identifying solid press leads: TV, newspaper and
> online.  From now until January 5, I am trying to get organizations to put 
> a
> notification about the upcoming event on the homepage of their website
> and/or under the events tab.  Feel free to put up the notification on your
> Facebook, MySpace or blog.
>
> On January 5, advanced tickets can be purchased through the link on my
> website: www.theaccidentaladvocate.com and on the Landmark Theatres site. 
> I
> will have a press release and new launch of my website with a trailer. On
> January 12th, we will be having a screening and panel discussion in
> Washington, D.C. to kick-off the week and draw in the media.
>
> Please feel free to send out the flyer. There is a short synopsis for you 
> at
> the end of the e-mail and you can read a recent review:
> http://blog.newsweek.com/...  or you can visit the website:
> www.theaccidentaladvocate.com.
>
> Sincerely,
>
> Jessica Gerstle
>
> ABOUT THE FILM:
>
> When Claude Gerstle, a surgeon and athlete, suffers a tragic bicycle
> accident that leaves him paralyzed from the neck down, he and his 
> daughter,
> Jessica, discover hope in the politicized area of science called stem 
> cells.
> "The Accide
> ntal Advocate" is a wheelchair odyssey of a father and daughter
> who track down the thinkers, the politicians, the crusaders and the
> naysayers in an effort to understand the promise and potential of the
> science and why a political quagmire is stalling a cure.  By way of
> background, Jessica was at NBC News for 12 years, mostly producing for
> Dateline NBC and left the network three years ago to independently produce
> this documentary. She employed her dad as her correspondent and they
> traveled the country to meet "A" list scientists driving the research and
> interviewed everyone from Dr. Jamie Thomson to Michael J. Fox to Arnold
> Schwarzenegger.  They spent time interviewing politicians on both sides of
> the aisle and went right into the East Room of the White House.  The film
> premiered at the Democratic and Republican Conventions as part of the 
> Impact
> Film Festival.
>
>
> Our second woman warrior is Jennifer Longdon. A black belt practitioner of
> Tae Quan Do, Jennifer became paralyzed after being shot in the back by an
> unknown assailant.
>
> Despite major health problems associated with paralysis (I was seriously
> afraid we were going to lose her, earlier this year) she has fought back 
> to
> the advocates' field of engagement-the endless struggle to raise funds for
> research for cure, in this case, the Reeve-Irvine Research Center.
>
> Here is a letter from Jennifer about her latest adventure-complete with a
> press release about another martial artist, her teacher, volunteerin
> g to do
> a 13.1 mile wheelchair marathon with her, although he is able-bodied-check
> it out.
>
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
> Dear Friends,
>
>
> A year ago I began a fundraising effort to personally raise $1,000 for
> spinal cord injury research.  I challenged 10 friends to do the same. 
> We've
> had varying levels of success.
>
> First, thanks to those who elected to participate.  Thank you to all who
> contributed and very special thanks to Susan & David, Kumar, Marty and
> Richard for reaching the goal with individual pledges.  My own efforts 
> have
> fallen short due in large part to a very serious illness this past spring
> that nearly took my life.  I am fully recovered and back on track.
>
> On January 18, 2009 I will push my first half-marathon (the PF Chang Rock
> and Roll Marathon), all 13.1 miles of it.  It's hard to believe that just 
> 4
> months ago, I could not push to the mail box and a trip around the block 
> was
> impossible.
>
> So I am begging for sponsors.  Will you consider pledging? And, if you act
> now, I'll give you the 1/10th of a mile gratis. ?  $5 per mile is just 
> $65.
> $10 a mile is fantastic! "Flat" pledges of any amount ($25, $50, $75 or
> MORE) are also welcome.  I am grateful for whatever you can pledge.
>
> This has been a year of great victories and deep loss.  Just days ago,
> another friend died a death he would not have faced if not for his spinal
> cord injury. The shock and grief have been a m
> ental setback.  I'll be racing
> for those like Patrick who have alternatively pushed me and held me up 
> when
> I could not.
>
> Every dollar raised will go directly to the researchers at the 
> Reeve-Irvine
> Research Center who work to treat and cure a host of neuro-degenerative
> disorders.  There have been great strides made since my visit to the lab
> almost a year ago.  I am more confident than ever that we're on the right
> track.
>
> I'll even be so bold to say that I believe that the next 18 months will
> see the start of human clinical trials and breath-taking announcements as 
> we
> move closer and closer to a treatment for neuro-degenerative disorders
> including spinal cord injury.
>
> To contribute, either e-mail me with your pledge challenge or make a
> contribution here.  http://jenlongdon.chipin.com/...  I'll update you on 
> my
> results ASAP following the race on January 18th.
>
> Jennifer Longdon
>
> 602.738.1227
>
> Area Martial Artist Sits Down For Those Who Cannot Stand Up.
>
> Accepting the challenge of a student, Sr. Master Mark Kaup-Lee will 
> compete
> in the PF Chang Rock N Roll Half Marathon in a wheelchair.  A 7th degree
> black belt and owner of 5 area martial arts academies, Kaup-Lee was
> challenged by his student, Jennifer Longdon, herself paralyzed, to 
> complete
> the 13.1 mile race as she will; in a wheel chair.
>
> The pair will raise money for spinal cord injury research.  Longdon, an 
> area
> martial artist and student of Kaup-Lee's sustain
> ed her spinal cord injury
> more than four years ago in a still-unsolved shooting.  Longdon was riding
> in a vehicle driven by her then-fiancé, David Rueckert, when the pair was
> shot multiple times by an unknown assailant.  Rueckert was shot in the 
> head;
> Longdon was shot in the back.
>
> Kaup-Lee was helping Longdon with her training when she groused "You think
> it's so easy?  You strap 50 pounds to your back and race 13 miles on your
> hands."  Kaup-Lee in that instant agreed.  "It's not the same for me."
> Kaup-Lee explains "I have control of my balance and core muscles in a way
> that a paraplegic like Ms. Longdon does not.  But it's still pretty
> challenging."  Kaup-Lee's first taste of the difficulty faced by those 
> with
> spinal cord injuries came when he was training with Longdon one morning.
> "He flew up a hill while I chugged along behind.  When he reached the top 
> I
> told him to try it again without using his abs.  It was a little more
> challenging the second time." Longdon teased.
>
> While wheel chair competitors are not, in themselves, new or noteworthy;
> Kaup-Lee and Longdon will not participate in the racing chair division but
> in the standard division.  "We'll be using regular wheelchairs weighing
> between 40 and 50 pounds instead of the lighter racing chairs." Kaup-Lee
> explains.  "Ms. Longdon cannot get in and out of the racing chair any more
> without assistance."
>
> The pair hopes to each raise $2,500 for the Reeve Irvine Research Cen
> ter.
> Donations can be made through http://masterlee.chipin.com/... or
> http://jenlongdon.chipin.com/... or checks made payable to Research for 
> Cure
> may be sent to Lee's Black Belt Academy, 715 W Baseline Rd Tempe, AZ 
> 85283.
> Note "Lee" or "Longdon" in the memo.
>
>
> And last but never least, please say hello to one of advocacy's most
> dedicated fighters, Rayilyn "Ray" Brown.
>
>
> Have you ever read an article on line that just infuriated you? Nowadays,
> many articles contain comment lines, so you can respond-but that takes
> effort and time, and most of us leave it to somebody else.
>
> Not Ray. Despite having a life-and-death personal battle with Parkinson's,
> she takes the time to make a difference. For example: whenever I have 
> asked
> readers of this column to write a letter or email to a Senator to support
> stem cell research, a favor I ask far too many times-I know most people 
> will
> be too busy to actually respond, if I get one out ten, that is a lot,
> probably the best I can hope for-but always, always, Ray comes through. I
> know she does, because she emails me a copy of her letter.
>
> She also answers negative attacks on the field, as below, when someone
> opposed our research on  religious grounds, in a long letter saying among
> other things that scientists were "playing God" with human lives.  First,
> the opposition viewpoint, (which gently puts supporters of research in the
> company of Nazis, and suggests our afterlife destination):
>
> "No human=2
> 0being ever developed from anything other than a human embryo. No
> human embryo ever developed into anything other than a human being.
> Therefore, does it matter where in its development stage we define "life"
> since whenever we eliminate the embryo we have definitively eliminated the
> human being into which it would have developed? Whether it is worth the 
> cost
> of one human life to prolong the life of another should be left up to the
> person whose life is thus to be eliminated. And that means one had better
> wait a bit.
>
> "And if one decides to go down the road of "that life is not/will not be
> worth living" as justification for using the embryo as a source for what
> could truly be miracle cures, one will find it is not so much a road as a
> slippery slope, at the bottom of which is eugenics in the finest 
> traditions
> of Nazi ideology. You know what they say about the road to hell ..."
> (emphasis added).
>
>
> To which Ray responded:
>
> "Blastocysts are not people.
>
> You say, "whenever we eliminate the embryo we have definitively eliminated
> the human being into which it would have developed? Whether it is worth 
> the
> cost of one human life to prolong the life of another should be left up to
> the person whose life is thus to be eliminated..."
>
> Those of us who support embryonic stem cell research do not believe a
> blastocyst is a person any more than an acorn is an oak tree.  Every seed
> does not become a plant nor does every bl
> astocyst become a person unless the
> conditions of implantation and successful development until live birth 
> occur
> are met.   Not all seeds sprout.  You cannot "ask" a blastocyst whether it
> is worth using it for research because it is a few microscopic
> undifferentiated human cells that, will NEVER,  if left alone in a petri
> dish become anything.
>
> What you are doing is protecting cellular human life - seeds - at the
> expense of actual persons whose lives have been destroyed by disease or
> injury and are not asking that their lives be "prolonged" but made 
> bearable.
>
> I can't think of anyone who would favor destroying people for research. 
> But
> cells are not people.  They are potential life.  ALL cells are, not just
> germ cells.
>
> Are scientists playing "God" by manipulating cells?  ... many people 
> believe
> God gave man the gift of intelligence to heal suffering...
>
> I would suggest that if you oppose life saving research you rely solely on
> prayer and let the rest of us have the benefits of science.
>
> -
>
> -Rayilyn Brown
>
> Director AZNPF
>
> Arizona Chapter National Parkinson Foundation
>
>
> Three women. Three warriors. Three friends.
>
> Source:  Daily Kos
>
>
> Rayilyn Brown
>
> Director AZNPF
>
> Arizona Chapter National Parkinson Foundation
>
> [log in to unmask]
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