Posts Tagged ‘ALS-TDI’

WGN imapcts life with MDA telethon….

Monday, September 6th, 2010 by annemarie

I’ve been bawling for an hour…I had not expected to have such a reaction. I was just going to tune in and see how it was going…so after a particularly prolific morning of journaling, I turned it on. With in 5 minutes I was blubbering like a snot volcano! I was overcome with gratitude for all the people nationwide who have given of themselves: from either a dollar at a vendors point of sale to businesses who have donated 10% of sales from particular events. The child performers got me in the gut. I’ll cop to needing a good cry but I must mention ~It took me completely by suprise.

I am connected to the telethon this year, I wrote a note to the emcee’s for their gift bag and I am an ambassador for the telethon and the news clip regarding my speechless speech will be featured on the telethon.

When I was at the end of my rope and had no insurance it was an MDA clinic that covered my medical tests and care before my diagnosis. As scary as the diagnosis of ALS was, the uncertainty of not knowing what was happening was a frightening abyss uncertainty led to fear which led to doubt…it was barely manageable. I will be forever grateful for the reach of the MDA and their committment to ALS research by supporting ALS-TDI the onlt non profit research facility solely devoted to finding a cure for ALS.

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Ridiculous outstanding reviews of the Speechless Speech!

Tuesday, June 29th, 2010 by annemarie

Here is a shameless bit of self promotion!
I asked a few people to review their experience with the Speechless Speech~ It’s my intention to use this type of presentation to pay for a really cool wheelchair for me and raise money for ALS research. I will split the fees 50/50 from companies and organizations as well as support fundraising efforts for MDA’s Augies Quest and ALS TDI.

Joshua Haas:
Certainly. Anne Marie, I’ve noticed a couple of things after being around you a few times. One is that ALS has made you a highly intuitive person. Related to this, everyone that has crossed your path describes being at the “Speechless Speech” with a common phrase, “Anne Marie said…” To me this is more amazing than a room full of people in tears followed by uncontrollable laughter (an emotional roller coaster). You don’t speak! Yet, all in attendance leave describing the events as if they had a one-on-one in depth conversation with you for hours. You have created an experience with an unequaled impact. The focus, attentiveness, and interaction of the audience blows me away each time; truly effective.
The next amazing aspect is the duration for which your lessons stay with your new friends (I had to drop Story From a New Friend in here). I know people who were attend your our first event with you upstairs at Rockit. They are still talking about changes they want to make in their life inspired by you and the “Speechless Speech.” For this demographic that usually writes off an experience the moment it is over, I am continually taken aback. You and your cause forever have my support in anyway necessary.

Kevin Conroy Smith:
(Kevin is a professional speaker himself!)
I started Story From a New Friend in 2005. During the last 5 years we have heard hundreds of stories but nothing has compared to Anne Marie’s speechless speech. The power she had went deeper than even our organization imaged could happen from a story or personal experience. It has been over a month since her speech and I still use several of her key points in my day to day life. Few times in your life you come across a person or experience that forever changes the way you live your life, this speech was one of those experiences and Anne Marie is one of those people. Single handily the most powerful speech I have attended.

“It has been over a month since her speech and I still use several of her key points in my day to day life”
“Few times in your life you come across a person or experience that forever changes the way you live your life, this speech is one of those experience and Anne Maria is one of those people”
“Will forever change the way I live my life”
“I will always help carry the Anne Marie speechless speech torch, that is how powerful this is”

Mike Brown says:

Anne Marie’s ‘Speechless Speeches’ are proof that actions truly do speak louder than words. Anne Marie has carefully crafted a powerful message that speaks louder than any voice that could have delivered it. I feel privileged having been in her presence.

How cool is that!?!

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Are America’s men IMPOTENT? Really?

Tuesday, June 8th, 2010 by annemarie

I don’t believe that many American men have Erectile Dysfunction!
I mean COME ON. I can’t watch a any sporting event anymore with out being inundated with Viagra, Cialis and two bathtubs on a cliff. I wonder how do men watch sports with their sons anymore? That has to be uncomfortable! ” UM Dad? What’s erectile dysfinction?…and can I catch it?… am I doomed to get it?”

Now if I were a man, and THE organ I have that symbolizes my virility and gives me sensual pleasure was not working…you can bet my ass would be on a phone with my Dr. SO FAST…they would feel the wind in the whole neighborhood! So is it REALLY neccessary and effective to bludgeon the public with incessant advertising? I mean how many men would forget? Oh yeah that’s right! My Dick doesn’t work! Shit, I need to call a Doc!

I understand it takes alot of cash to R&D a drug, I do really, I am afterall trying to raise $$ for a treatment to save my own life. And this is why I am bit more sensitive to this deluge of ED advertising that the average Joe. If We took the money from 1 ad per game, especially the big games, say oh STANLEY CUP FINALS for example or any NFL/NBA/ Baseball Game; and we put that money into research for orphan diseases, perhaps even ALS. I wonder at the difference an infusion of capital like that would make?

Currently, most of the research money in the ALS world is being raised by people dying from ALS and their families. Can we get a little love here? I would appreciate a blank screen for 15 seconds announcing that the $ that would have been paid for yet another 90 sec ED ad was being redirected by the Drug Co. AND the Network into research for Stage 2 Drug trials say at ALS-TDI or to Augies Quest or to some other established research facility who is devoted to an accelerated schedule to develope a therapy for ALS and other orphan diseases. This would make a difference for me! The network would gain goodwill, in the eyes of the public and only loose 15 secs of airtime, and the drug company would also get some goodwill and stop looking like greedy maleficent castrating whores.

Sound Good?

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tick tock tick tock…

Monday, February 1st, 2010 by annemarie

What’s that quote by Gandalf in the “Tale of the Two Towers”? Something of the order of…”Years and Years of waiting for people to get it together and suddenly I don’t have enough time!” This is a gross extrapolation on my part, and it’s exactly how I feel right now!

It could be because my event – the 1st annual Kiss My ALS Party/ Fundraiser begins in 10 days, or it could be that my surgery to install a feeding tube is now being pushed with the vigor of a broke used car salesman, or perhaps it’s because my energy has been lower and I’m behind on writing the workbook for the Master Plan program…AND we launch our 1st teleseminar February 18th! visit www.masterplanseminar.com for more information…either way all I can think about it there’s not enough time and the pressure is on!

I am not yet in full panic about the event – even though I can see I have tried to do too much and I haven’t delegated well, and I under-estimated both the expense of the event and the tendency of folks to wait til the last minute to purchase their tickets…FYI it would be a BIG FAT SUPPORT if ya’ll could buy your tickets SOONER aka NOW rather than later…so I can get a bead on the attendance. Please go to the event page on this site or to www.als.net and visit their event page to register…every dime we take in goes to ALS-TDI and the research they are doing there.

If I tell the truth, I’ve been living inside the conversation of ” There’s not enough time” since my diagnosis in March. Before then I had no lable or context for my condition – I only had symptoms and actions to correct the symptoms. I didn’t have a community or a type of disease or any expectation of what was to come. This is both good and bad. Good in that it’s brought me a laser focus to my work and to my speaking…I simply don’t waste my breathe if what I’m about to say is trivial or not critical to move the conversation forward. Good in that I’ve devoted this year to completing projects ( always an achillies heel for me~ I’m the QUEEN of leaving it 95% done) and fulfilling on my promises. Bad in so far as I’m fighting the mind set that there is no cure or process of healing for ALS. I refuse to believe this. There must be a way. It must be out there and I will do what there is to do in the meantime to keep myself in optimal health regarless of my condition.

My “condition” is slowing me down and it’s pissing me off! Just in the last 2 months, typing has become more of a struggle, both for accuracy and for my ability to write for long periods of time. I need to take frequent breaks…in my next post I’ll blog about some tricks to conserve my energy I have recieved from my genius Speech pathologist, Harvey Ostriecher. My forearms ache, as does my back from just above my waist to my shoulder blades. The muscle twitching has gone into overdrive feeling like hundreds of fireants are busy under my skin eating my connective tissue alive along the outside of my thighs, ribcage and across my tummy.

I am being a complete and total WUSS about my by-pap machine, which makes me feel as though I am suffocating under water, and turns me into an audible blubbering drooling fish face. Pretty. I am crystal clear this is just the beginning of my surrender to machines to support my every bodily function. Lovely. What a pain in my fat ass. Honestly. I finally have the vision and purpose and life’s work question sorted out for my self and now it’s a goddamn race. Really? Too bad I don’t have the Wizard’s staff and the White stallion to ride away into the sunset with, it’s so much more picturesque.

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