MDA Against ALS
MDA is the world leader among voluntary agencies fighting ALS, offering the most comprehensive range of services. People with ALS receive care at 200 MDA-supported ALS clinical centers across the country. MDA also leads the search for a treatment or cure for ALS through its aggressive, worldwide research program.
MDA is the world leader among voluntary agencies fighting ALS, offering the most comprehensive range of services. People with ALS receive care at 200 MDA-supported ALS clinical centers across the country. MDA also leads the search for a treatment or cure for ALS through its aggressive, worldwide research program.
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Correspond with Nancy on   |
August 26th, 2009 at 9:53 am
I was flipping television channels yesterday afternoon when I saw a clip of the work you’ve been doing to raise awareness of ALS. I am only 20 years old and have seen 2 of my family members pass due to ALS, and another currently living with it. I was young when i lost my grandmother. I was not so young when her son, my uncle, passed. Yet again, I will be older and wiser when another uncle of mine loses the battle. My family started a foundation called the Olson ALS Foundation to commemorate those we’ve lost in our family. Through extensive research on my family and a few others nationwide a familial type of ALS has been discovered. My grandma died of ALS and two of her 11 kids Have been diagnosed. The history before that is quite blurry, but my generation is next. I have, roughly, 23 cousins and everyday of my life all i can worry and think about is, “who’s next?” As a very large family we really and truely cherish what we have, but I know what it feels like to want another day. I’ve seen this disease up close and personal three times, and my uncle won’t be the last. I read someone’s post that said that ALS is living torture. I can’t disagree, but it’s not only a personal torture it radiats. My Grandpa out lived his wife, his son, and was present when another was diagnosed (still battling). I couldn’t imagine the grief my grandpa went through, but not a day goes by that i don’t worry about my dad. Their are still a few of my aunts and uncles that haven’t cleared the usual onset age. If they do I’m left to worry about my little sister, my cousins, myself, and any children I should ever hope to have. I appreciate, from the bottom of my heart, everything your doing to raise awareness and funds for research. It’s families like mine that will be constantly reminded of this terrible disease through the generations. We will never forget and we will never stop fighting.
Thank you so much!
With Love,
Olivia Olson
Olson ALS Foundation
August 25th, 2009 at 10:56 pm
Nancy,
I want to thank you for bringing this horific condition to the foreground. My father-in-law was diagnosed in 1999 and was taken from us in 2000. It seems like an uphill battle to find a cure but with celebrities calling attention to it, maybe we can get the funding and help we need to find a cure. Thank you from the bottom of my heart.
August 25th, 2009 at 10:44 pm
Betty’s grace, hospitality, caring heart and spirit is being carried forward by you, Karen, Ashby and all the other angels that she helped create. I know you miss her everyday, yet you are still making her the proudest mama EVER!!
August 25th, 2009 at 10:39 pm
Nancy,
I live in Canada, just outside of Ottawa. I was watching Access Hollywood tonight and saw the segment on the WWE and Betty’s Battle and it caught my eye immediately. I lost my mom,June, my best friend, on September 15, 2005 after an 18 month battle with ALS. When I watched the video clip with you describing your experience the tears started flowing. The bi-pap machine, feeding tube, not being able to swallow, choking…it brought back that sick feeling in my stomach again…not just because of what I went through but the thought that someone else had to watch their mom go through the same thing, broke my heart. I spoke to my mom everyday and live just down the street from the house I grew up in so I saw her everyday as well. I took her to all of her appointments and when the Neurologist diagnosed her I was sitting holding her hand. I felt like the room was getting smaller and everything started spinning around me. My mom was 60 years old when she was diagnosed. We kept her at home right until the end, with my Dad, my sister and I taking care of her. She never completely lost her voice, her’s began in her limbs and progressed rapidly. There are so many people out there dealing with this horrible disease and yet when I see someone who has lost a loved one to it I feel like I have to approach them or write to them because it feels like we’re in this club that until you’re a member of it you never truly know what it is about. When my mom passed away we were all with her and I thought I was prepared because I couldn’t see her suffer anymore but when she left I was stunned and couldn’t believe that she would no longer be in my life…she was my best friend, my confidante, my rock and she was gone. I couldn’t describe how I felt until I watched the episode of Grey’s Anatomy where George’s dad died and he said “I don’t know how to exist in a world that he no longer does” and that was it. It’s been four years in a couple of weeks and I’m part of a committee to raise awareness for ALS but there is not a day that goes by that I don’t think of her, miss her or talk to her. I am in the process of writing a book about my experience caring for my mom and losing my mom to ALS. There are so many emotions that you go through and unknowns that sneak up on you that you have to deal with continually. I’ve met a few people who ask me what to expect because as you know with the number of people with ALS not being as high as cancer or heart disease people don’t really know what to expect. I feel like I owe it to my mom to write a book about her, her love of life and the journey we went through…the ability to help others.
My heart goes out to you and all other families that are included in this “club” that we all find ourselves in.
August 25th, 2009 at 3:06 pm
Dear Nancy,
How can I ever forget your mother’s gentle nature , Southern hospitality and grace. Oddly enough, with her many wonderful qualities…what I remember most about Betty is how much she loved you & the way she said your name….”NaaaanCeee” in her true Gone with the Wind accent. It was so endearing. How blessed was she to have you and you to have her. Because of your special bond, many people with ALS will find hope. I am proud to say, “that’s my friend and her inner beauty far exceeds what we see on the outside.” Much love to you and your family~ Lacy
August 24th, 2009 at 11:07 pm
Nancy,
I know the feeling of the ringing in the ears and not being able to hear the diagnosis. My wonderful father passed away 4 months after being diagnosed with ALS. He passed away on the night that my daughter and his pride and joy (as he called her) graduated from high school. My aunt was with him and he waited to here that she had her diploma and that we were at home all okay, then he left. It was the hardest thing that I think I have been thru. I applaud you for all your work for ALS. Thank you for everything.
August 24th, 2009 at 11:01 pm
Hello,
Thank you so much for supporting ALS awareness. We need more people like you to take a stand against this horrible disease. I lost my father in 2002 & my sister in 2007 to ALS. Please keep up the fight.
August 24th, 2009 at 3:37 pm
Nancy, I was watching Fox News last week and caught a glimpse of your story. It was like me talking 3 years ago. I lost my mom and best friend also to ALS. I still have nightmares about what this disease did to her body and her spirit, but I have chose to rest on all the memories she gave me for 41 years. She also trusted God and knew she would be in heaven very soon. She had the disease 3 years and lost everything except for the enormous love that was outpoured to her during her sickness. I can rest knowing she is in heaven walking and talking to everyone.
August 24th, 2009 at 10:22 am
Nancy,
Not sure how I came upon this site – however, I’m sure someone had a hand in helping me here. We met through brief involvement in “The Sun Fun Miss High Tide” contest many years ago. I was helping the NMB Chamber of Commerce and you won hands down. (by the way, I have lots of photos if you would like them)
My most sincere condolences to you and your family on the loss of your mother. I moved back to Charlotte, NC in 2000.
Nancy, my aunt Mary(my second mother) fought a most horribly drawn out painful battle with ALS for five years. Her children lived out of state, so I was there watching the once active, constantly loving woman drained of her life spark. She loved to dance…I carried her to and from the bathroom. As we waited together in her nursing home room for her children to come for the last time; she’d been quiet for months with no signs of whether she was hearing us, I read the bible to her and we talked. OK, I talked and she listened. I sang a few songs thinking she’d try to tell me to hush! Her oldest daughter called every 30mins. and I’d put the phone to her ear and I could hear Barbara begging her to hold on until she arrived…telling her how much she loved her. I spend several hours reliving all the wonderful times I remembered spending with her and Uncle Roland and their family….I asked her to give Uncle Roland (her husband)and Ronnie a big hug and kiss for me when she met them in heaven (Ronnie was her 16yr. old son that died on Halloween night 25yrs. ago). Barbara arrive after I’d had my 12hrs. with her. It was sad leaving but to watch someone you love so much suffer was torture. And ALS is human torture.
God Bless you for your work with the MDA and ALS Division
August 24th, 2009 at 8:19 am
The most important person in the world to me, my aunt Dianne, passed away of July 25, 2009 from ALS. It took over her already small frail body and killed her in 13 months. The pain and suffering that she went through was something so horrible that I never want anyone else to have to endure what she did. Im so glad that someone is bringing light to this devestating disease. Its not acceptable for their to be no cure and might as well say no treatment as that one medicine can only hope to extend life by a couple of months. I had to sit helpless and watch the person I love most in the world fade away and their was nothing I could do to help her other than be there and talk to her and tell her how much I loved her, but thats not enough. We need a cure. Thank you so much to everyone that is spreading the message about ALS.