Unknown
Let's just be honest, Shit Ass Disease sucks and sucks BIG time. The crazy thing is that I am not in half as bad of shape as a lot of people with the Shit Ass Disease. None the less I can feel sorry for myself a little every now and then, can't I? Hell yes I can and I will damn it all to hell. Being told you have a fatal disease isn't anything anyone wants to hear EVER. At the beginning I just didn't want to know anything but little by little the realities come whether you want to know or not. I am having to remodel my bathroom so I can take a shower. I am a bath person but can't get in and out of it so forget that, it's not going to happen. I am totally wheelchair bound now so we have to buy a wheelchair accessible fucking mini van! Yes a mini van. How am I supposed to look cool in a mini van??? Then there is the "transfer" from wheelchair to chair or wheelchair to bed or wheelchair to anything. I leaned forward to get something off my night stand and almost face planted. That in hind site would have been hilarious watching Mike try to get me out of that one!
I know things are going to get worse, much worse and there isn't a fucking thing I can do about it or for the other people that suffer from the same disease. I watch people like Chris Rosati who has the Shit Ass Disease, who handed out doughnuts to schools, children hospitals and cancer patients because it made him feel good. There are a lot of people with the Shit Ass Disease that do good everyday. Geez I really am a shit head!
Then there are the people that criticized the ice bucket challenge. Let me tell you where your money went and is still going. 18.5 million of the 21.7 million goes to research. In 75 years there is one pill that extends your life 2-3 months. Whoopie shit and it cost $1,400 per month! Research is needed and needed badly. Getting in on a trial is nearly impossible. There is a trial which inserting spinal cord-derived neural stem cells into 15 people, 14 tolerated the injections. This trial started in 2010. Don't you think we should be a little further along???? I understand FDA not rushing it through but 5 years? If I want to try an injection that might work why the fuck not! You can go to change.org and sign a petition for the FDA Accelerated Approval of Genervon's GM604 for use in ALS the Shit Ass Disease. You can also write/email your U.S Senators to take action. I know some of you have signed and it is deeply appreciated.
MESSAGE TO US SENATORS
[Share your personal story or just state that you are contacting the Senator on behalf of the ALS Community].
The 2012 FDASI Act gave the FDA authority to deviate from rigid rules and demonstrate flexibility in providing the terminally ill access to new treatment options. For the past month, thousands of people have been urging the FDA to grant Accelerated Approval with post-marketing requirements for a new ALS treatment, Genervon’s GM604. This request is based on:
1) Demonstrated Safety
2) Evidence of Efficacy
3) GM604 meets the criteria for the Accelerated Approval Program (AAP):
a. Surrogate Endpoints: Genervon's Phase 2A trials showed improvements in the treated group in both clinical measurements and multiple biomarker measurements.
b. Urgent and Unmet Need: No new treatment for ALS has been approved since Rilutek in 1995, which extends life expectancy by a few months with no improvement to quality of life. Another multi-year clinical trial for GM604 is a death sentence for more than 500,000 people.
Our FDA is under the jurisdiction of the U.S. Senate. Therefore, it is ultimately our elected officials’ responsibility to ensure that the right of life and the personal liberties of terminally ill patients are protected. This includes the right of these patients to access potentially life saving treatments.
On my behalf, please contact the FDA today and tell them that you support our self-advocacy and understand the urgency in getting potentially life-saving treatments to patients with ALS. Also, please ensure that Genervon’s GM604 is being given full and fair consideration for the Accelerated Approval Program.
Texas
Cornyn, John - (R - TX)
(202) 224-2934
http://www.cornyn.senate.gov/public/index.cfm?p=ContactForm
Cruz, Ted - (R - TX)
(202) 224-5922
http://www.cruz.senate.gov/?p=email_senator
If you donated as part of the 21.7 million dollars raised in the Ice Bucket Challenge, thank you, you are my hero. If you walked in the ALS walk, thank you, you are my hero. Let me tell you what else your money is going for. It has gone to loaning me and countless other's a $20,000 power wheelchair. You heard me that's what power wheelchairs cost and more. They service it without a word. Mine had 4 miles on it when they so gracious brought it to me. They have giving me grants to purchase things I don't have a choice to buy. There was one patient that couldn't leave his house because he couldn't afford a ramp. After the Ice Bucket Challenge the ALS Association was able to build him a ramp. I read on one website where someone said, "OK great, now can we find a cure for a real disease". I bet if they or someone they loved were diagnosed with the Shit Ass Disease they would know what a "real" disease is. I wouldn't even wish it even on that dumb ass moron.
MESSAGE TO US SENATORS
[Share your personal story or just state that you are contacting the Senator on behalf of the ALS Community].
The 2012 FDASI Act gave the FDA authority to deviate from rigid rules and demonstrate flexibility in providing the terminally ill access to new treatment options. For the past month, thousands of people have been urging the FDA to grant Accelerated Approval with post-marketing requirements for a new ALS treatment, Genervon’s GM604. This request is based on:
1) Demonstrated Safety
2) Evidence of Efficacy
3) GM604 meets the criteria for the Accelerated Approval Program (AAP):
a. Surrogate Endpoints: Genervon's Phase 2A trials showed improvements in the treated group in both clinical measurements and multiple biomarker measurements.
b. Urgent and Unmet Need: No new treatment for ALS has been approved since Rilutek in 1995, which extends life expectancy by a few months with no improvement to quality of life. Another multi-year clinical trial for GM604 is a death sentence for more than 500,000 people.
Our FDA is under the jurisdiction of the U.S. Senate. Therefore, it is ultimately our elected officials’ responsibility to ensure that the right of life and the personal liberties of terminally ill patients are protected. This includes the right of these patients to access potentially life saving treatments.
On my behalf, please contact the FDA today and tell them that you support our self-advocacy and understand the urgency in getting potentially life-saving treatments to patients with ALS. Also, please ensure that Genervon’s GM604 is being given full and fair consideration for the Accelerated Approval Program.
Texas
Cornyn, John - (R - TX)
(202) 224-2934
http://www.cornyn.senate.gov/public/index.cfm?p=ContactForm
Cruz, Ted - (R - TX)
(202) 224-5922
http://www.cruz.senate.gov/?p=email_senator
If you donated as part of the 21.7 million dollars raised in the Ice Bucket Challenge, thank you, you are my hero. If you walked in the ALS walk, thank you, you are my hero. Let me tell you what else your money is going for. It has gone to loaning me and countless other's a $20,000 power wheelchair. You heard me that's what power wheelchairs cost and more. They service it without a word. Mine had 4 miles on it when they so gracious brought it to me. They have giving me grants to purchase things I don't have a choice to buy. There was one patient that couldn't leave his house because he couldn't afford a ramp. After the Ice Bucket Challenge the ALS Association was able to build him a ramp. I read on one website where someone said, "OK great, now can we find a cure for a real disease". I bet if they or someone they loved were diagnosed with the Shit Ass Disease they would know what a "real" disease is. I wouldn't even wish it even on that dumb ass moron.
Sue-per Heroes!
So am I blessed that I can still talk, move my hands and eat? Yes I am. Am I frustrated for the Shit Ass Disease community? Hell yes I am. So if you find it in your heart take the time and drop your Senator an email or sign the petition.
OK, so I go from wallpaper to the Ranch to a fucking soap box. I have the Shit Ass Disease, I am allowed. Frustrated, angry and tired yes I am but this is what I am fighting for. I promise I will go back to the fun stuff for now on...well maybe not forever.
Pissy mood on..........
Sue "CiCi" Cook
Can't help but love you even in a pissy mood!!!! Lol!
ReplyDeleteLetter to Senator in the mail!!!! xoxo