Wednesday, May 13, 2015

DC

      Michelle and I just got home from our trip to Washigton DC for National ALS Advocacy Day. 700+ caregivers, family members and friends came out with 130 men and women with ALS to stand up and talk with our government officials on Capitol Hill. The majority of us stayed at the JW Marriott in DC. It was a madhouse there, in a good way. Many of us zipping around in wheelchairs, hoggin elevators and taking over the bar. This trip really intimidated me, but now that it's come to an end I'm ready to fight even harder than before to beat ALS.
      I'm one of only a few people in the Rockford area to have ALS and at the moment the youngest for sure. It's incredibly isolating to be one of the only people fighting this battle in an area. Being in DC this weekend allowed me to meet guys just like me that have to battle this shitty disease everyday as well. Pat Quinn, who started the Ice Bucket Challenge and who loves baseball, just like me. Jay Smith, a music connoisseur from Austin, TX who relies heavily on music to cope, just like me. Tim Shaw, ex-NFL star who is always up for a good time and has a few speeding tickets on his record, just like me. Justin Dodson, an Iraq vet from Chicago, who doesn't mind cursing on Capitol Hill, just like me. And many other guys and gals that might be older than me or have nothing really in common with me, but who had awesome attitudes and strength that I look up to and can rely on whenever I need a pick-me-up.
      Not only did I meet awesome pALS (patients with ALS) this weekend, but amazing supporters from the Greater Chicago, St. Louis and Wisconsin area. Mike, Melissa, Amanda, Melanie, Sam, Bruno, Julie, Ann, Maryilene, the list goes on. All of these amazing people had some tie to the ALS community. They lost a friend, parent, sister, brother, or are just sick of losing people to this awful disease and are sick of the lack of support and treatment out there that they made it their calling to support the community. I had a blast taking on Capitol Hill, drinking beers, seeing the sights, and leaning on each other for support with these people this weekend. I made friends I'll have for life in these people.
      Michelle and I were able to see the sights together. The Washington monument, WWII monument, which was so cool, the reflecting pool, Lincoln of course, Vietnam monument and got within 4 blocks of The White House, someone important must have been there. We had dinner with an old friend at a DC institution, Old Ebbitt Grill, where I had fantastic crab cakes and a great beer or two from Atlas Brewery. The ALS Association took care of us and put us up in a beautiful room, made sure accommodations were there so I could use the shower and rented a fun scooter for me to get around way faster.
      The Hill. All the ALSA chapters hopped aboard buses for the Hill on Tuesday where we broke off into groups to talk with our senators, congressmen and representatives. My group had five meetings where we met with senators Durbin and Kirk, as well as congressmen Kinzinger, Dold and Ducksworth. We let them know the importance that they support the ALS Registry, designate another $10 million towards research, which is a pebble in the bucket, to support the Steve Gleason Act that guarantees that we have access to augmentive communication devices, and to inact the Dormant Therapies Act, which in a nutshell allows big pharm companies to reinvestigate treatment plans and drugs that have been shelved due to patent rules. If it gets through congress it will be huge for us! 
      Warriors are losing their ability to communicate, walk, hug their loved ones, breathe. Warriors are dying. That's flat out unacceptable. A man with ALS told me this weekend, "today is the worst I've ever felt, and the best I'll feel for the rest of my life." That sucks. That is unacceptable for far too many of us to feel that way every morning. Something must be done and you best believe a fire was lit under my ass to make an impact on this community, not just for my sake, but for all the warriors I met this weekend.

Gronks

21 comments:

  1. Chris, your story from DC is inspiring. So glad you were able to go. Keep on! God bless you both. Brian

    ReplyDelete
    Replies
    1. I have been suffering from Amyotrophic lateral sclerosis (ALS) disease for the last two years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulate all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (Hepatitis B and Cancer) by this Man Dr Segun and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr Segun telling him about my (ALS Virus) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr assured me that i have cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can email Dr Segun on : (dr.segunsplletemple@gmail.com)..... THESE ARE THE THINGS DR Segun CAN ALSO CURE.. GONORRHEA, HIV/AIDS , LOW SPERM COUNT, MENOPAUSE DISEASE, PREGNANCY PROBLEM, SHORT SIGHTEDNESS PROBLEM, Stroke, Bring back ex lover or wife/husband....sir i am indeed grateful for the help i will forever recommend you to my friends!!!...

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    3. hello everyone here i want to tell the whole world about dr harry herbal mixture cream ...Dr harry penis enlargement herbal cream in Africa.This is the only Male Penis Enlargement Cream has been used by men around the world supplement that has been PROVEN to-enlarge your penis – safely, quickly, and importantly – PERMANENTLY.Full harry Penis Enlargement Cream when used will Increase in penis length by 1-5 inches Increase in penis width by 20%helps in preventing Premature Ejaculation.Achieved longer, rock hard erections All gains in penis length and width are 100% permanent Full harry Penis Enlargement Cream is also:100% Herbal, 100% Safest with no side effect and its of two types I have the one for enlargement and for reduction and your advised to use it by message 100% Satisfaction and Money Back Guarantee. DR. harry, About my products i have herbal cream and oil 100% Permanent Guaranteed resulting it on your body where you feel you want to reduce or enlarge which will help you to be strong and you get the desirable size you want-within 3-5 days and when you get your desirable size you are advised to stop using it and the results you gain will remain permanent We also do deliveries all over AFRICA, and worldwide so i would like to know first when do you need the product.for more information call or whatsapp Dr.HARRY +2348143240563 email drharrysolution@gmail.com or visit his website http://drharrysolutio.wixsite.com/dr-harry
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      HEART FAILURE
      PREMATURE EJACULATION
      HEPATITIS A,B,C AND MANY MORE
      THANKS

      Delete
  2. I have been suffering from Amyotrophic lateral sclerosis (ALS) disease for the last two years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulate all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (Hepatitis B and Cancer) by this Man Dr Segun and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr Segun telling him about my (ALS Virus) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr assured me that i have cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can email Dr Segun on : (dr.segunsplletemple@gmail.com)..... THESE ARE THE THINGS DR Segun CAN ALSO CURE.. GONORRHEA, HIV/AIDS , LOW SPERM COUNT, MENOPAUSE DISEASE, PREGNANCY PROBLEM, SHORT SIGHTEDNESS PROBLEM, Stroke, Bring back ex lover or wife/husband....sir i am indeed grateful for the help i will forever recommend you to my friends!!!...

    ReplyDelete
  3. I have been suffering from Amyotrophic lateral sclerosis (ALS) disease for the last two years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulate all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (Hepatitis B and Cancer) by this Man Dr Segun and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr Segun telling him about my (ALS Virus) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr assured me that i have cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can email Dr Segun on : (dr.segunsplletemple@gmail.com)..... THESE ARE THE THINGS DR Segun CAN ALSO CURE.. GONORRHEA, HIV/AIDS , LOW SPERM COUNT, MENOPAUSE DISEASE, PREGNANCY PROBLEM, SHORT SIGHTEDNESS PROBLEM, Stroke, Bring back ex lover or wife/husband....sir i am indeed grateful for the help i will forever recommend you to my friends!!!...

    ReplyDelete
  4. I have been suffering from Amyotrophic lateral sclerosis (ALS) disease for the last two years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulate all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (Hepatitis B and Cancer) by this Man Dr Segun and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr Segun telling him about my (ALS Virus) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr assured me that i have cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can email Dr Segun on : (dr.segunsplletemple@gmail.com)..... THESE ARE THE THINGS DR Segun CAN ALSO CURE.. GONORRHEA, HIV/AIDS , LOW SPERM COUNT, MENOPAUSE DISEASE, PREGNANCY PROBLEM, SHORT SIGHTEDNESS PROBLEM, Stroke, Bring back ex lover or wife/husband....sir i am indeed grateful for the help i will forever recommend you to my friends!!!...

    ReplyDelete

  5. GET RID OF ALS VIRUS OR ANY KINDS OF DISEASES WITHIN 8 DAYS WITH THE HERBS OF DR ADAGBA

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    ReplyDelete
  6. God have been very kind to me, despite the hard times he made me go through but now I give him all the praise for relieving my mum of her stroke through the help of an herbal doctor by name Uwadia Amenifo. Helen Smith is my name, and we live in England. My mum was diagnosed of stroke eight months ago, and she was in so many pains as she can’t even walk, go to rest room, or move her body. She even has to excrete in her body most times. I am her only child, and I so much love my mum because my dad died when I was 4 years old. So I grew up in the hands of only my mum without fatherly care. It happened that when she was diagnosed of stroke by our family doctor her condition was still good by then, but in just one month after her diagnoses, her condition became very worst that the doctor then said her stroke is acute and no longer partial. And that it will only take God’s intervention for her to be well again and for her to be able to retain the full use of her brain. So her ailment continues until God intervened before God’s intervention, I have carried her to so many churches for prayers and have traveled very far to look for a cure for her. I Travelled to America to see some doctors if they can help even if its surgery they can carry out on her provided she don’t die, because I really needed her around me. It was in America an Endocrinologist by name Jill Marie Abelseth MD from Albany, NY told me about an herbal doctor who she knows of, that have successfully cured stroke/ human parasites. So she advised me to contact the herbalist, so I contacted him, and explained to him what my mum is going through, so he counseled us and asked few questions about my mum which I told him. So he prepared the herbs, and shipped it to me in England. I gave my mum the herbs just as he has instructed, and just exactly as he said that his herbs will totally cure my mum. His herbs really worked perfectly well, and cured my mum. As I write this testimony my mum is totally cured of her stroke and she has started her normal business as usual. So I want all here to help me thank Doctor Uwadia Amenifo for his great help in helping me cure my mum of her stroke with his herbal medicine. Please if you know of anyone who have stroke or who have one disease or the other and his/her doctor says there’s no cure to that disease please I want that person to contact doctor Uwadia Amenifo, and give him a try. His contacts are Email (doctoruwadiaamenifo@gmail.com) his number is (+2349052015874), Thanks.

    ReplyDelete
  7. Thanks be to God for sending me a deliverer who cured my Amyotrophic lateral sclerosis (ALS) i lived with this virus for 3 years without a cure, i lost strength and i became weak i tried all possible means to get cured but they failed,all my hope was lost, i thought i would die soon, i searched for natural remedies and i found a lot of people who where cured by Dr Harrison so i contacted him and he gave me hope and prepare his herbal medicine which i took for 8 days as instructed and to my greatest surprise i was cured using his herbal product. am so happy, i can't believe i could be healed again. please contact him via email if you are having ALS diseases his email is SACREDSPELLTEMPLE@HOTMAIL.COM or add him on whats app +2348079540032. contact me for more information huffmike077@gmail.com or call me 1 954 327 8869

    ReplyDelete
  8. I have been suffering from (ALS) disease for the last Three years and had constant pain, especially in my knees. During the first year, I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i was searching on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from ALS by this Man Dr ojomo and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr ojomo telling him about my (ALS) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr ojomo assured me that i have cured, after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE So friends my advise is if you have such sickness or any other at all you can email Dr ojomo on. Ojomospellcaster@gmail.com or contact me on viber or call me +1 (831) 574 5152 or Email me for more information. Ellamaris662@gmail.com I am indeed grateful for the help, i will forever recommend you to my friends..........

    ReplyDelete
  9. I have been suffering from (ALS) disease for the last Three years and had constant pain, especially in my knees. During the first year, I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i was searching on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from ALS by this Man Dr ojomo and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr ojomo telling him about my (ALS) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr ojomo assured me that i have cured, after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE So friends my advise is if you have such sickness or any other at all you can email Dr ojomo on. Ojomospellcaster@gmail.com or contact me on viber or call me +1 (831) 574 5152 or Email me for more information. Ellamaris662@gmail.com I am indeed grateful for the help, i will forever recommend you to my friends,

    ReplyDelete
  10. hello everyone here i want to tell the whole world about dr harry herbal mixture cream ...Dr harry penis enlargement herbal cream in Africa.This is the only Male Penis Enlargement Cream has been used by men around the world supplement that has been PROVEN to-enlarge your penis – safely, quickly, and importantly – PERMANENTLY.Full harry Penis Enlargement Cream when used will Increase in penis length by 1-5 inches Increase in penis width by 20%helps in preventing Premature Ejaculation.Achieved longer, rock hard erections All gains in penis length and width are 100% permanent Full harry Penis Enlargement Cream is also:100% Herbal, 100% Safest with no side effect and its of two types I have the one for enlargement and for reduction and your advised to use it by message 100% Satisfaction and Money Back Guarantee. DR. harry, About my products i have herbal cream and oil 100% Permanent Guaranteed resulting it on your body where you feel you want to reduce or enlarge which will help you to be strong and you get the desirable size you want-within 3-5 days and when you get your desirable size you are advised to stop using it and the results you gain will remain permanent We also do deliveries all over AFRICA, and worldwide so i would like to know first when do you need the product.for more information call or whatsapp Dr.HARRY +2348143240563 email drharrysolution@gmail.com or visit his website http://drharrysolutio.wixsite.com/dr-harry
    note dr harry also have herbal medicines to problems like
    PENIS ENLARGEMENT
    ERECTILE DYSFUNCTION
    DIABETES type 1 and type 2
    HERPES GENITAL WART
    LOW SPERM COUNT
    WEAK ERECTION
    BREAST ENLARGEMENT
    PROSTRATE CANCER
    HIV/AIDS
    SPELL OF ALL KINDS LIKE EX BACK,CANCEL DIVORCE,BREAK UP SPELL ,PREGNANCY SPELL,PROMOTION SPELL,JOB SPELL
    ALS
    HPV 123
    PILE
    ASTHMA
    HEART FAILURE
    PREMATURE EJACULATION
    HEPATITIS A,B,C AND MANY MORE
    THANKS

    ReplyDelete
  11. I have ADHD, OCD, depression, primary biliary cirrhosis (autoimmune disease) and ALS. I didn't have health care I just thought it was a stroke, but it started with my voice. When it started to get worse I went to a neurologist. and was diagonised with amyotrophic lateral sclerosis. i was able to walk with assistance nothing was really working to help my condition.I went off the riluzole (with the doctor’s knowledge) and started on amyotrophic lateral sclerosis herbal formula i ordered from Health Herbal Clinic, Just 7 weeks into the Herbal formula treatment I had great improvements with my slurred speech, this is a breakthrough for all amyotrophic lateral sclerosis sufferers, visit Health Herbal Clinic official website www. healthherbalclinic. net or email info@ healthherbalclinic. net.

    ReplyDelete
  12. I have been suffering from (HERPES) disease for the last four years and had constant pain, especially in my knees. During the first year, I had faith in God that I would be healed someday.This disease started to circulate all over my body and I have been taking treatment from my doctor, a few weeks ago I came on search on the internet if I could get any information concerning the prevention of this disease, on my search I saw a testimony of someone who has been healed from (Hepatitis B and Cancer) by this Man DR TRUST and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so I wrote to DR TRUST telling him about my (HERPES Virus) he told me not to worry that I was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later I started experiencing changes all over me as the DR assured me that I have cured, after some time i went to my doctor to confirmed if I have been finally healed behold it was TRUE, So friends my advice is if you have such sickness or any other at all you can email drtrusthelphome@gmail.com sir I am indeed grateful for the help I will forever recommend you to my friends!!! with your lovely Email Address ( drtrusthelphome@gmail.com or you can also WhatsApp him on this number +2348110497645

    ReplyDelete
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    ReplyDelete
  14. I never thought i would be HIV negative again after been diagnosed in 2015, i have tried everything possible in life from one doctor to another, one hospital to another, series of tests, different kinds of medication, i had already lost hope until i meet Great Dr. OSAGIE online testimonies, a specialist in herbal medication from Africa, i contacted him (drosagiesolutiontemple@gmail.com OR
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    ReplyDelete
  15. I was diagnosed with ALS (amyotrophic lateral sclerosis) 15 months ago. At that time riluzole was prescribed. I found I could not tolerate it. did very little to help me. The medical team did even less. My decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of my primary physician, I would have died. There has been little if any progress in finding a cure or reliable treatment. My ALS got significantly worse and unbearable because of my difficulty catching breath. Last year, i started on a natural ALS Herbal therapy from Green House Herbal Clinic, i read a lot of positive reviews from patients who used the treatment and i immediately started on it. I had great relief with this herbal treatment. I am doing very much better now, no case of shortness of breath or difficulty swallowing,, my ALS condition is totally reversed. Visit Green House Herbal Clinic website ww w.greenhouseherbalclinic .com. This treatment is a miracle!!

    ReplyDelete
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  17. Hello viewers around the Globe, I was despondent because i had a very small penis, about 2.5 inches soft and 4 inches hard not nice enough to satisfy a woman, i have been in so many relationship, but cut off because of my situation, i have used so many product which doctors prescribe for me, but none could offer me the help i searched for. i saw some few comments on the internet about this specialist called Dr, OLHIA and i decided to contact him on his {oliha.miraclemedicine@gmail.com} so I decided to give his herbal product a try. i emailed him and he got back to me, he gave me some comforting words with his herbal pills for Penis Enlargement, Within 3 week of it, i began to feel the enlargement of my penis, " and now it just 4 weeks of using his products my penis is about 9 inches longer, and i had to settle out with my Ex girlfriend Ella, i was surprised when she said that she is satisfied with my sex and i have got a large penis. Am so happy, thanks to Dr OLIHA I also learn that Dr OLIHA also help with Breast Enlargement Hips and Bums Enlargement etc.. If you are in any situation with a little Penis, weak ejaculation, small breast_hips_bums do get to Dr OLIHA now for help on his email {oliha.miraclemedicine@gmail.com} or whats app him number: +2349038382931

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  18. I was in trouble when my doctor told me that i have been diagnosed with
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    lost hope and wept most of the time, but one day i was surfing the internet
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    Herpes,
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    Hepatitis B,
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    Have a nice day people.

    ReplyDelete