Hi y'all,
Forgive me for not being a loyal blogger. If you have given up on reading my adventures I can't blame you. If you did stick around I truely want to thank you. I am struggling with time at work, with my love, renovating the new house, being there for my parents and dealing with the harsh and ugly face of ALS which my mom is still going through. Some days are good, some are not so good and some days are just [fill in the blanks with curse words of your choice]
If any day why did I choose this day to write an update on my blog? Stephen Hawking died. ALS claimed another life and it just gutted me this morning. Next to a brilliant scientist that had the talent of actually reaching a broader audience with his explanation of quite dificult principles in astrophysics, astrobiology and cosmology he was the spark of hope for those understanding the face of ALS. He was the boy who lived....until just now when his body caved and he died. The world lost a brilliant mind, a man with a intense dose of humor and a talented writer. Today ALS won. Again. And I can't stand it anymore. It has to end NOW. Not just for my mom, not just for Stephen Hawking, not just for all of the patients I have met and those who are no longer here. Not JUST for them....ONLY for them. We owe them the answer. We owe it to them and to ourselves to rise up to the species we are and use our resourcefulnes, ambition, cunningnes and determintation to stop this disease.
And yes you CAN make that happen. You do not need to be a scientist or have a billion dollars to actually make a change. All you need to do is step up to the plate, quit looking at governement or whoever for answers and put on your grown-up pants. Don't tell me you think it is weird that we have to fundraise to find an answer because that isn't helpful at all and it doesn't change a thing. Don't look at me dumsbtruck like you just saw a cow catch a flying banana....go out there and help us fight this asshole disease. Don't talk about changing things....go change them! You have to the power to do so! How?? Well let me help you out here a little:
1. Donate money to your local ALS association
2. Set up a fundraising activity for your local ALS Association
3. Vote!! Yes you can choose the people in your governement and by doing so you can change the face of health care, financing scientific research and overall rules and regulations that form real obstacles for people dying of ALS. So VOTE...it is your RIGHT to do so. Now USE IT!!
4. Make each and every step count by downloading Charity Miles and logging miles for the American ALS Association. The answer can never come from just one country so the solution will come from international projects and so far the ALSA is the only group on charity miles working for patients suffering from ALS. Think it doesn't make a difference? Well think again! Thusfar all of us logging miles for the ALSA have raised about 25.000 dollars. Real cash, real differences!
5. volunteer at a fundraiser for ALS
6. join a city swim, a local swim, a walk or any other fundraising activity
I ran today and I am out of shape, extremely tired and every breath I took set my lungs on fire today. I ran 4 miles and it took me 44 minutes. I am angry about that because the shithole disease is claiming my mom and breaking the hearts of my family. Breaking us. But I ran! I am not done running. I am not done ranting and I am not done fighting. ALS will kill my mom like it killed Stephen Hawking and so many others but ALS will NEVER kill my spirit. Ever! So whatever you do.... Don't come talking to me about wanting change for all of this. Put your money where your mouth is and help! If you don't have the funds to do so than put your energy where your mouth is and walk the walk!
Together we will end this! Keep it unreal and make it happen.
Until we read again, as always,
Love Marlies
Forgive me for not being a loyal blogger. If you have given up on reading my adventures I can't blame you. If you did stick around I truely want to thank you. I am struggling with time at work, with my love, renovating the new house, being there for my parents and dealing with the harsh and ugly face of ALS which my mom is still going through. Some days are good, some are not so good and some days are just [fill in the blanks with curse words of your choice]
If any day why did I choose this day to write an update on my blog? Stephen Hawking died. ALS claimed another life and it just gutted me this morning. Next to a brilliant scientist that had the talent of actually reaching a broader audience with his explanation of quite dificult principles in astrophysics, astrobiology and cosmology he was the spark of hope for those understanding the face of ALS. He was the boy who lived....until just now when his body caved and he died. The world lost a brilliant mind, a man with a intense dose of humor and a talented writer. Today ALS won. Again. And I can't stand it anymore. It has to end NOW. Not just for my mom, not just for Stephen Hawking, not just for all of the patients I have met and those who are no longer here. Not JUST for them....ONLY for them. We owe them the answer. We owe it to them and to ourselves to rise up to the species we are and use our resourcefulnes, ambition, cunningnes and determintation to stop this disease.
And yes you CAN make that happen. You do not need to be a scientist or have a billion dollars to actually make a change. All you need to do is step up to the plate, quit looking at governement or whoever for answers and put on your grown-up pants. Don't tell me you think it is weird that we have to fundraise to find an answer because that isn't helpful at all and it doesn't change a thing. Don't look at me dumsbtruck like you just saw a cow catch a flying banana....go out there and help us fight this asshole disease. Don't talk about changing things....go change them! You have to the power to do so! How?? Well let me help you out here a little:
1. Donate money to your local ALS association
2. Set up a fundraising activity for your local ALS Association
3. Vote!! Yes you can choose the people in your governement and by doing so you can change the face of health care, financing scientific research and overall rules and regulations that form real obstacles for people dying of ALS. So VOTE...it is your RIGHT to do so. Now USE IT!!
4. Make each and every step count by downloading Charity Miles and logging miles for the American ALS Association. The answer can never come from just one country so the solution will come from international projects and so far the ALSA is the only group on charity miles working for patients suffering from ALS. Think it doesn't make a difference? Well think again! Thusfar all of us logging miles for the ALSA have raised about 25.000 dollars. Real cash, real differences!
5. volunteer at a fundraiser for ALS
6. join a city swim, a local swim, a walk or any other fundraising activity
I ran today and I am out of shape, extremely tired and every breath I took set my lungs on fire today. I ran 4 miles and it took me 44 minutes. I am angry about that because the shithole disease is claiming my mom and breaking the hearts of my family. Breaking us. But I ran! I am not done running. I am not done ranting and I am not done fighting. ALS will kill my mom like it killed Stephen Hawking and so many others but ALS will NEVER kill my spirit. Ever! So whatever you do.... Don't come talking to me about wanting change for all of this. Put your money where your mouth is and help! If you don't have the funds to do so than put your energy where your mouth is and walk the walk!
Together we will end this! Keep it unreal and make it happen.
Until we read again, as always,
Love Marlies
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