15
Sep
2014
52

Welcome to my new ALS advocacy site!

KissMyALS.org was created to spark hope, spread awareness, raise funds for research and discuss the possibility of managing this disease. It’s important that we stay positive as much as possible with our journey with ALS. We need to finally CURE this disease and we can’t do it without YOUR participation and help!

 

I was recently diagnosed with Amyotrophic Lateral Sclerosis (ALS) at 26 years old. Unfortunately, I know how this horrible disease progresses. My grandmother was diagnosed when I was in middle school. My mom was diagnosed when I was in high school…and I guess it’s my turn.

 

Average prognosis is 2-5 yrs, BUT I don’t want to be just another statistic… and my bet is, neither do you. So stay tuned! I have a lot of valuable resources & inspirational articles in the works for the ALS community. If you would like a more in-depth explanation to what ALS is, click HERE. Please consider donating to ALS research by following this link: www.ALS.net/donate

 

Find me on facebook, twitter, & instagram for updates. We’re stronger together. Let’s do this!

 

Warm regards,

Anthony

12 Responses

  1. connor

    My dad has ALS, he was diagnosed in Dec of 2008 on Christmas Eve actually. Thank you for your bravery. This disease blows so hard. A friend of mine from College died 3 years ago from ALS, he had the familial version too. He (Tim) made a Web series chronicling his struggle. The Often Awesome Series. There is support in ALS communities out there. We bond over the shittines of this disease. My heart is pouring love in you direction. Stay strong.

  2. Penney DeMaris

    Anthony I am so proud of you .. I love your Ice Bucket Challenge and I cried with you when you posted your video .. As I lost my baby brother at 50 years old David Noyes only after a 7 month diagnoses of ALS.. It was so fast and much too soon for us to “Let him Go” as he wanted to do .. He was such a vibrant young man ,he was such a giving and caring man, he was a son, a brother, an uncle to my daughter Stacey Guptill, and a father to Tim Egan, and Josh Noyes. We have a Facebook page we did on our journey together from day one to the end March 26, 2013. Check out our journey we did have a lot of giggles.. and I would do t all over again to take care of him ..it is Noysee Nation .. thank you and I pray for you and all the ALS patients.. We need to find a cure now..

  3. Anthony, thank you so very much for sharing your story with the world! So many people who had never heard of ALS now know what it is and how urgently we need treatments and a cure. My family joins yours as we fight together!

  4. Tuii MxBeath

    I have ALS (called MND ie Motor Neurone Disease in UK, New Zealand and Australia) with bulbar onset. Diagnosed nine months ago I am going downhill with no brakes! The sooner this disease is understood and a cure found, the better! Well done Anthony for all you have done to raise the profile of this orphan illness.

    Go well and good luck!
    Tui McBeath

  5. Linda Johns

    Anthony, I have watched your video, seen you on Ellen (twice). My family lived through this horrible disease over 15 years ago when my brother was diagnosed. He passed away over 10 years ago and we watched him slowly lose all the muscle in his legs to where he could not walk, then it was his hands and arms and he could no longer feed himself. Then he could not talk anymore and it went on and on until he no longer wanted to eat or drink. He died peacefully in his own home with all of us around him, but he really did not know we were there. But all of a sudden his eyes opened and he said his wife’s name and he was gone. I have been donating to ALS for over 15 years now and before that MDA. I would have never thought it would affect our family. You are such an amazing young man taking care of your Mom, then being diagnosed yourself. I was so hoping Ellen would get you on her show. I pray every day there will be a cure to this horrible disease that took my brother’s life. I pray for you now and your Mom. If you need to talk you can call me at 858-484-5210. I live in San Diego.

  6. Anthony, this website is so vibrant and so inviting. I absolutely love the Faces of ALS page. The photos bring so much reality to ALS that words can not always accomplish. Of course that is one of the reasons we both love photography! I will be here supporting your work, being inspired by it and watching the whole thing grow. Thank you for everything you have given me and the world!

  7. T.E.A.M. = Together Everyone Accomplishes More!
    Anthony, You are one courageous young man! Thank You so much for helping shine a light on this horrendous and ugly disease ALS. We look forward to TEAMING Up with you to help find a cure. Stay Strong, Stay Courageous ♡ ●Michael Lopez Jr. RIP 1/2013●

  8. Dear Anthony,
    Uhh, is it weird that I want to be friends with you? I think you are hysterical and charming. I am an American girl living in Paris with my husband, daughter and my ALS. I was diagnosed four years ago. You are quite the trooper to be taking care of your mother while you have the same debilitating disease. I know how hard that is. I write a blog called Have Some Decorum that you might enjoy. Bravo to you for all your advocacy and for that amazing video and for your heartfelt tears. You are awesome. Sincerely, Eleanor

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