Let's start 2009 by taking action.
Hi and Happy New Year (or as I call it New Moment),
I just signed the petition "Signatures for Spinal Cord Research" sponsored by Step Now. I'm asking you to click on the (first) link above and add your name to this petition to help us reach our goal of 1,000,000 signatures.
Adding a personalized letter to petitions helps to ensure success. Please feel free to use my letter (below) as an example or a template, or just simply take a couple seconds to type in your name and click submit.
On behalf of individuals, friends, and family of SCI sufferers, I deeply appreciate your support of this cause.
Best,
Melanie
PS BONUS! After signing the petition, I was also sent a thank you letter with a coupon code for $10 off at Gaiam.
MY PERSONALIZED LETTER
On September 18, 2008 I was diagnosed with Transverse Myelitis, a rare and debilitating neurological disease that attacks the spinal cord, leaving 30% of its victims paralyzed or bedridden for life, 30% with partial paralysis and other socially and physically painful disabilities, and the other 30% with partial or near recovery. Few ever recover full function, and not one of us knows which percentage we'll end up in, or if a recurrence will take us into a deeper level of disability.
I am more than a date and a diagnosis, and I'm trying to figure out who that person is now, but that's difficult to do when insurance companies deny coverage of the few available treatment options.
Before my disease, I was an active 33-year-old and was once a professional dancer and political and social activist. Now I live moment-to-moment, doctor-to-doctor, and med-to-med without enough energy to participate in any of my old activities, let alone a normal life. Now my life is spent navigating a new world with a rebellious, disabled body; an altered mind; and battling insurance, as well as the ongoing pain and effects of a body in revolt.
Without new or definitive research, insurance companies will be able to continue to deny coverage of viable treatment that can either increase ability or deliver a cure. Whether SCI is caused by disease, disorder, or injury, we deserve the same medical, life, and work opportunities of fully-abled people, but this is not currently the case.
I urge you to support the critical research that will give those of us suffering from SCI the opportunity to have the ability and energy to be contributing members of society and experience the same joys of living of fully-abled people.
The Days & Nights, Slants & Twists, & Wobbly Meanderings of a Woman With Rare & Incurable Neurological Disorders
1.01.2009
6 comments:
Thanks for sharing your comments on my blog. Please stop back soon or subscribe by clicking http://feeds.feedburner.com/NeuroDetour.
If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (http://www.facebook.com/inbox/?ref=mb#/group.php?gid=44446668472), a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.
Best,
Melanie
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What the hell!!!
ReplyDeletei read your petition, and reasonably i followed the link, this is FAKE!!! we have to reach 1.000.000 petitionS and we are in the range of thousands! 2000 or something, are you insane? we'll never get it and for what? for them, the site, to take our address details and use it for spam or whatsoever!
this is not the issue, what i want to tell you is: LET US STOP BEING RIDICULOUS, LET US STOP NAGGING, AND ASKING FOR BEING LIKE OTHERS, WE ARE WHAT WE ARE, BUT WHAT WE WANT IS A CURE, AND THE CURE IS IN STEM CELLS.
now my comments on other and previous posts, and maybe i comment later on, directly on every post, itself. but for now, i read all of them, yes, and what are you expecting from any diagnosis, listen to me: UNKNOWN DIAGNOSIS! you cannot lose your time searching for a diagnosis, what happened had happened, this is it, it is over, this is the misery, no more miseries will occur for you, blind vision? no! and no!!! many drugs cause blured vision, and i think you are taking much drugs... FORCE IT! look at the sky, light is very important. i am sorry, but just accept it. as for other things that i want to tell you, and i don't know why i talk to u publicly, but it is easy :), just i read your post and post the comment, neurodetour is getting like a personal webmail that i need to check every day, so, what i was saying is that yes, dress as you like, and as for other things, pls do us some research on stem cells, bring us ppl who did this treatment, tm or similar, and what is the progress they got so far...
i want to say one more thing, don't count the days, the months, i told you before nobody knows! and as you said we are the advocate and we should be! we should drive the cure...
Dear Hox,
ReplyDeleteFirst, I’d like to thank you personally for your ongoing participation and contribution to my blog. Your comments add depth, insight, and a bit of controversy (yumm!), and as I wrote in “To My Readers”, I am grateful.
Second, I’d like to point out that this is my first response to any comment. Thanks for pushing me to do so with your provocative response to what I felt was a modest call to action.
I did further research into your comments, and I’d like to address some of your comments and hopefully alleviate some of your concerns, while persuading more people to take action in whatever way works for them and for whatever issues they feel are most important.
While, I’d love to respond to all of your comments now, my response would become a novel, so I’ll keep this comment devoted to your concerns of legitimacy and privacy. Don’t be surprised, if I you find a post in the near future that responds to even more.
Third, I may be whacky, but no, I’m not insane. ☺
Fourth, and most important, let me state clearly, I BELIEVE THIS PETITION IS LEGITIMATE, and here’s why and I how I feel this and can state this with, what I feel is, authority:
1. My Background:
a. As a professional interactive copywriter, I have written and read many privacy policies. The petition’s sponsor’s privacy policy (http://www.care2.com/help/general/privacy.html) is clearly listed in the bottom nav, the standard location for privacy policies.
b. As an activist – part 1: I have signed many petitions, many of which, but not admittedly not all, have contributed to saving lives, changing public policy, etc. Creating and/or signing petitions are two of the easiest ways to begin the cycle of change and progress. One petition, may lead to another. Regardless of the outcome, it is a process, or perhaps just a single step among many, that at minimum presents the opportunity to bring awareness – among individuals, public officials, decision makers, funders, and the media – to a given cause. I recommend sending personal emails and or letters in conjunction.
c. As an activist – part 2: If being an activist gets me called a nagger, then I am a proud nagger.
d. I started and ran my own nonprofit organization for 10 years.
I’ll get into more detail about my experience and these points further into my response.
2. Number of Signatures:
a. This is just a goal. A hefty one, but still a goal that should give us incentive to do everything in our power to reach it. As I stated in point #1, every action, every signature, carries the potential to make a difference. Anecdote: A petition I signed last year, with just 2,000 some signatures, led to saving the life of an Iranian Labor Activist from death by public stoning.
b. The first signature was just 2.5 weeks ago on 12.15.08 by “Barbara Carlile, France,” 2,500 signatures in 19 days …not bad.
c. On that first day, 273 people signed it. If everyone who signed this petition forwarded it to their contact lists (who might then forward it, etc., etc.) posted it on their social networking pages, blogs, or Websites, could we get 1 million signatures? Who knows? Would 1 million signatures get the results we’re looking for. Who knows? But (call me insane) I believe it’s worth the effort, and I’m willing to share my time for that possibility.
3. The Petition’s Sponsoring Organization, Step Now (Stand Together to End Paralysis Now):
a. On their homepage (stepnow.org), they state, “This is a site that aims to go beyond politics, beyond national boundaries and cultures – a site whose task in hand is to support all viable and promising research leading to clinical trials and ultimately to a CURE.” Isn’t this what we want?
b. Their Website ends in .org, which generally means they are a nonprofit. While I didn’t verify this, the government strictly monitors nonprofits. Any illegitimate practices would put them at risk of losing their 501(c)3. Either way, Step Now is a global member-based organization, comprised of dedicated, individual activists that share your goals of finding a cure.
c. Step Now is actively working to gain support for stem cell research: “[Stem cells] have the potential to provide cures or new treatments not only for spinal injuries but also for many diseases and injuries... Embryonic stem cells in particular have the promise of being the key factor in bringing about a cure for spinal cord injuries. On the strength of this promise we come together to fight for this cure.” (http://www.stepnow.org/back.html)
d. Despite their nascence as an organization (they are approximately 2 years old), their members have aggressively addressed their mission globally through TV appearances, petitions, letters, etc. on local, regional, national, and international levels. You can read more about their actions in their forum and spotlight pages (http://www.stepnow.org/together2.html).
4. Petition’s host’s legitimacy: Care2 (http://www.care2.com/)
a. Statement 1: Care2 states that they are “the largest online community of people passionate about making a difference.” While, I’m not going to verify it, their numbers are quite impressive, as well as their list of nonprofit partners, and accomplishments. If this statement were not true, in the Web world and in this litigious society, they would have been sued by now.
b. Partnerships are key in making a difference, and Care2 not only understands this but they have a clear mission statement that addresses this (http://www.care2.com/aboutus/partnerships.html). Among their 350+ nonprofit partners are highly respected big-hitters, such as UNICEF, the American Red Cross, the ACLU, Habitat for Humanity, Susan G. Komen for the Cure, American Medical Association (AMA), PBS, and Greenpeace. The list goes on and on…
c. They have more than 10 million individual members. Membership is FREE.
d. More than 31 million people have signed petitions on their site.
e. Their petition success stories (http://www.thepetitionsite.com/) include petitions with as few as 692 and as many as 51,000+ signatures.
5. Care2’s Privacy & Transparency Policies:
In response to: “for [Care2] to take our address details and use it for spam or whatsoever!” – Hox Genre
a. Care2 is a verified (http://www.truste.org/ivalidate.php?url=www.care2.com&sealid=101) member of TRUSTe. “The TRUSTe program is consistent with government and industry guidelines concerning the use of your personal information. These standards include the Organization for Economic Cooperation and Development (OECD) Guidelines on the Protection of Privacy and Transborder Flows of Personal Data, the Federal Trade Commission and Department of Commerce's Fair Information Practices, the California Online Privacy Protection Act, and the CAN-SPAM Act.”
b. From TRUSTe on Care2: “Care2.com is a certified licensee of the TRUSTe® Privacy Seal Program. The privacy statement and practices of www.care2.com have been reviewed by TRUSTe for compliance with our strict program requirements.”
c. From Care 2 on TRUSTe: “TRUSTe is an independent, non-profit whose mission is to build users' trust and confidence in the Internet by promoting principles of disclosure and informed consent. Because Care2 wants to demonstrate our commitment to your privacy, we have agreed to disclose our information practices and have our privacy practices reviewed and audited for compliance by TRUSTe.”
d. As stated in point #1, Care2’s privacy policy is easily accessible (http://www.care2.com/help/general/privacy.html#disclose)
e. From Care2 on their policy: “Care2 takes seriously the issue of safeguarding your privacy online. Please read the following to understand our views and practices regarding this matter, and how they pertain to you as you use our many offerings.”
f. In their policy, you’ll find clear, comprehensive Q&As to all privacy questions. I believe this Q&A addresses you’re greatest concern: “Q: Does Care2 sell e-mail addresses to advertisers? A: Not without your direct permission. We respect your privacy and despise SPAM.”
****************************
So, it’s now 4:30AM. I’m exhausted, but I hope I’ve accomplished my goal of alleviating your concerns in this admittedly lengthy and perhaps overly thorough response. It’s been fun dialoguing with you.
Anyone else, want to chime in? I think Hox has brought up a lot of interesting points worth discussing.
Verbosely yours,
Melanie
My Dearest Mel,
ReplyDeleteI AM VERY VERY VERY SORRY!!! WHAT I WAS SAYING IS NOT INTENDED TO BE PERSONAL, IT WAS JUST AN OPINION...
THE ANGER INSIDE OF ME WAS WRITING, I SUFFER WHEN I HEAR OF ANYONE WHO IS SUFFERING!
okayyy, the good news now, i signed the petition: http://www.thepetitionsite.com/2/signatures-for-spinal-cord-research ! :)
now i am planning to make it reach the ultimate number of receivers possible...i will use the best means, to achieve an exponential increase in signatures rate, too.
i am really sorry if my previous comment was offensive in any means, and if it was then i am ready to delete it or u can delete it on my behalf, just to keep the integrity of this blog.
thank you for all the information you provided, you enlightened us on the importance of the petition and of such action.
Also, i want to thank you for informing us about the legitimacy of thepetitionsite and the well known Step Now organization (Stand Together to End Paralysis Now - www.stepnow.org) which many of us already support. As for me i didn't know neither where it (the petition) was hosted nor the sponsors.
thank you, one more time, for your reply which was special, at least for me, being the first comment you write on your blog. i am wacky too so i can drive you to write a special entry for me :).
the information you presented and supported your claim with was really significant and important, i am convinced by now, we should act! you won the debate.
Finally, i am glad to read all your writings.
i was very pleased and excited to know you better, to know about your profession and expertise. You are very interesting person, i told you that before.
Sincerely
thehoxgenre
Melanie,
ReplyDeleteGirl, what were you saying about brain fog? You are so sharp. I am so impressed with you. Thanks for the reminder about how spreading the word can plant the seed of consciousness that leads to investigation, healing, and growth. Keep on talking, writing, and keeping on.
Love you!
Julie
hi there..
ReplyDeletestumbled upon this site when I did a technorati search on my own blog..guess u read about my own lil encounter with TM. Yea I survived..Thank God. As my doctors said many time..I am one of the unlucky ones to be struck but...I am also the very lucky one that survived with very minor defects. So..I am truly grateful. I have yet to read thru ur history in full..jus wanted to say HI..before I drift off to other page. Stay strong. Hang in there. Took me years to get my 'youthful' life back. Hoep you can do it too!
Dear Hox (Can I call you Hox?),
ReplyDeleteNo apologies necessary! And no offense taken.
This blog is full of my opinions, and, while cheerleading is always welcome, it's important to hear opposing views. Sometimes we continue to challenge them and sometimes we learn/experience something new, or both.
Please keep posting, keep sharing your opinions - all of them, and keep me on my toes. This is an interactive forum (and news leak: it will become even more so in the future), and all responses are welcome.
NO ONE should ever be worried about offending me.
Thanks for taking action. I'm moved that I could be a catalyst for that. Keep being provocative...the petition is up to nearly 2700 signatures now - that's a 200 increase in 2 days, and I bet your participation contributed to that growth.
Best,
Melanie
PS Per your comment about deleting your response, I'd like to make some comments to all readers:
A. I'm a huge fan of Karen Finley, i.e., I believe wholeheartedly in free speech.
B. All comments are automatically validated w/out moderadtion, because:
1) See A
2) I believe that anyone reading this blog and posting their comments are people that deserve to be heard
3) As a fellow TM'er, you understand the necessity to keep life as simple as possible. Moderating comments is another step that could take away energy from reading them.
C. ALL comments, even so-called offensive ones, are welcome. This is not a solicitation for offensive comments, but if someone posts something (including myself) that is insensitive, discriminating, "offensive", or malicious, I believe it's an opportunity for an exciting dialogue, which is one of the most important aspects of the interactive forum of a blog.