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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   |
December 30th, 2009 at 6:50 pm
Merry Christmas Nancy
I was very sad to hear of the passing of your Mother Betty, I lost my little Brother Robert to ALS a few years ago so I am still freshly dealing with his passing. Especially at Christmas as Robert loved Christmas and his wife and two great boys, We can never replace what the Creator took from us and maybee in time we will understand just why. The one thing that Robert was sad and mad at was the lack of real help for this disease here in Canada, I will never forget my little Brothers great suffering from the deadly ALS.This disease strips away all dignity and eventually kills every muscle within the human body, I truly wonder Nancy who this disease affects more those who have it or the loved ones that are forced to stand by and watch them suffer in silence as we scream inside for answers. My Brother Robert and I are poster boys for ALS Ontario and I am proud to be Roberts big Brother, ALLWAYS FOREVER. Nancy please keep up the great awareness and funding campaighn, Betty and Robert are counting on us to make the difference.
Merry Christmas and love I send to you,
David Grey Eagle Sanford.
416-615-2754
Toronto Canada
December 23rd, 2009 at 4:29 pm
My daddy was diagnosed December 9, 2008 with ALS. This is the most horrible thing to watch happen. He was a healthy 57 year old and then on July 9 2009 he lost his battle. We are still in shock he and my mom were married 30 years and were the best of friends. The worst was the disease took his voice and I miss the sound of it. I treasure the emails he would type out for me. My heart hurts for you.
December 21st, 2009 at 3:12 pm
I remember every moment of the day I found out my Grandma, my best friend, was dignosed with ALS. I remember the grief I felt in hearing my Grandma tell me that the prognosis was only months (I was 16 at the time.) In that moment I said, “NO, Grandma we are going to fight this.” FIGHT she did. She didn’t succomb to the disease in months instead she fought a brave battle that lasted more than three years. I remember her lying in the hospital bed barely able to open her beautiful eyes until she looked at me and she smiled…My Grandma knew that as a family we were strong enough to let her go….I told her to fly.
December 20th, 2009 at 6:24 am
Hi Nancy,
I just watched your farewell show tonight, a day later at 2am while nursing my 7 week old. My mom is 56 and has ALS. I feel like my story is similar to yours. Newly married and a new mom and taking care of my newborn and my mom all at the same time. It’s a lot to handle. It’s such a terrible disease; I can’t think of anything worse, except thank God we get to spend time with them and tell them how much we love and appreciate them. Life is too busy and hard to work on the ALS fight now, but I promise I will in my mom’s memory in the future.
Laura
December 18th, 2009 at 9:30 pm
Thank you for this beautiful cause that you established for your mother. Just from what I read about your mother, it reminded me of my sweet grandmother who also passed away from this tragic disease. It is so devastating to see a beautiful, vibrant, outgoing, strong, amazing woman like my grandmother (and your mom) die from a disease that silenced her voice but never her spirit. I chose my career as a Speech Language Pathologist in honor of my grandmother “Mamaw,” in order to try and help the individuals and their families deal with the tragedy this disease causes. I’m so very sorry about your loss and pray that a cure will be discovered quickly. It’s wonderful that you have brought “light” to this cause! Your mother is your angel and is smiling down on you! I’m sure she and my grandmother cannot stop TALKING about how proud they are of their families and how they are so happy. Thank you again Nancy.
November 30th, 2009 at 8:00 pm
On August 29th of this year I found this fitting tribute to Betty and her battle. As my mother was also fighting the same battle. But this morning at 4:30am she lost the good fight adding to the total of people who have been taken by A.L.S. May there be a cure found so others won’t have to feel the pain and frustration that we have been through.
November 22nd, 2009 at 10:46 am
i admire your efford.keep going like this.i can not even imagine what is like to have als or have a family member with it.i am a fan of wwe and i hope they continioue their support.
October 31st, 2009 at 4:28 pm
I am a 39 year old woman recently diagnosed with ALS this past spring. We need people like Nancy to raise awareness and help find a cure. My life depends upon it…..literally!
October 23rd, 2009 at 1:06 am
Hello Nancy,
Thank you for bring ALS information to the world. My sister passed away 2008 from ALS & she was only 56 yrs. old. We know she is an angel now but we miss her so. We participate in ALS walks in Ky. & Il. hoping to bring more attention to ALS.
October 20th, 2009 at 1:37 am
Hi Nancy
I was just watching Access tonight and great to see you were
presented with some awards for all of your hard work you have done with ALS.
We lost our Mom in April 2008 from ALS and we miss you so much, and reading these pages, brings tears to my eyes.
Take care of yourself Nancy
Bob
October 17th, 2009 at 3:36 am
Hi Nancy, my Grandmother died on New Year’s Day of 2005 from ALS and I wasnt able to see her before she died because my family didnt want me to remember her like that.
October 16th, 2009 at 11:48 pm
keep up the good work
October 16th, 2009 at 11:33 pm
Sorry for the loss of your Mother. My Uncle was diagnosed 5yrs agoe with ALS. At the beging they said it was a stroke and then Parkinsens. It affected his speech and swallowing not anything else at the time. His leg muscles where strong because he was a Mail man and he walked his route. But now he can hold only a glass with one hand and kind of feed hisself but nothing else. God has a purpose for him being around this long. My Uncle would like to be in Heaven with God. He depends on us to do for him. I somtimes think thisa is worse than Cancer. We will rember u all in our Prayers please do the same for us.
October 16th, 2009 at 8:26 pm
Hey Nancy,
My grandmother passed many years back due to ALS. It is a sad sad sad thing to have to live with, but with the help of those around you, the grieving process seems much easier to deal with and help you cope. I am a member of HOSA, and I am hoping that we can make Betty’s Battle another Service Project for our group. It may not make a big impact, but a small difference in the lives of those living with this disease.
October 16th, 2009 at 8:18 pm
This is so sweet that you are doing this in other of your mother.I lost my grandfather with lung cancer.It’s so sad
October 14th, 2009 at 3:49 pm
Nancy: Thank you for all the work you are doing to help find a cure for ALS. It would be wonderful if a cure were found so that others do not have to suffer this cruel fate. I am losing my husband to ALS and it is so sad to see him suffer the pain and loss of dignity every day. Bless you for your work.
October 12th, 2009 at 11:35 pm
Hi nancy my grandmamaw just passed away sept. 10th of this year ..6months prior to her death she was one of the most healthy,active when i ever knew…she was only 78…she to had ALS….she loved my kids…even in her last days when she would sleep she would keep talking about them in her sleep…last week my 3yr old daughter madison had a really really bad fever..i said outloud “mamaw judy work you magic on our lil madi i know your watching over us, please help us now” and i tell u what nancy the next morning madison woke up with no fever, no sickness, and a smile on her face…angels are amoung us and just know your mother betty isnt alone my mamaw judy is up there with her , and the way you made her sound they have alot in common….please help find a cure everyone!! donate!!!
October 12th, 2009 at 11:12 pm
Hi Nancy!
You did a great job on RAW tonight! I’ve always been a big fan of yours and your beauty radiates inside and out.
Keep up the great work…hope to see you on DWTS next season!!!
October 12th, 2009 at 10:56 pm
Hi Nancy Strange way i ended up here.My husband of 30 years was just diagnosed with als and a friend of ours son is 11 years old and he called me and said to come here he was almost crying said he wanted me to read up on this sight .So So thoughtful .Husband was diagnosed first sept. 09 and 3 weeks later have swallowing trouble .God bless you
October 12th, 2009 at 10:53 pm
Hi Nancy
I lost my childhood at a very young age I never got to meet my mother. When I was 2yrs. old she passed away to ALS, that was over 24yrs. ago. She was only 35yrs. old. Till this day I’ve always wondered how would have things been if I had my mother. My children will never get to meet their grandmother. I just want to take the time to thank you for all that you have done to raise awareness for ALS. May Gos Bless you and your family.
October 12th, 2009 at 10:29 pm
Sorry,about your mom.My prayers are with you.And your family.
October 12th, 2009 at 10:26 pm
hi nancy i know it rough to lose ur mother i know what it is like. i lost my dad nov 20 2007 due to als he was only 58 when he died. he died after only after 1 yr of being diagnose we go to als walks in louisville ky every yr around mothers day i attend every year
October 12th, 2009 at 10:20 pm
Hi Nancy
im sorrie to hear about you mother losing her battle with ASL. When i was 2 year old my nan died from ASL in January 4 1992 she could not talk and i have been doing the ASL walk in kingston ont cananda for the past 2 years our walk is in august. Im happy you putting out your voice about ALS becasue not alot people new about this disease. And i just got the purple ribbon tattto on my arm.
Caity
October 12th, 2009 at 10:19 pm
Hi Nancy, My dad also has ALS, it’s called Motor Neuron Disease (MND) in my country. It’s been so hard. I’ve seen him suffer for so long to the point where he can barely speak now. I’m sure you can empathise….I wish there was something I can do….he is my best friend and I’m going to miss him so much. Please tell me how you dealt with your last days with your mom.
October 12th, 2009 at 10:15 pm
Dear Nancy,
My brother, who is only 37 years young was diagnosed with ALS a little over a year ago. Nobody in the family had heard of it before this. He will be 38 on January 20, 2010. It’s still hard to believe that this devastating disease is real. He has 3 children. One daughter and two sons. He said he won’t get to see his children get married or have children of their own. He had back surgeries performed. Then after that, we all thought that his symptoms were caused from that. It started out in his dominant arm. He lost all of his muscle mass. It was like his arms were just a skeleton. It then proceeded to his legs. He was walking some but got to where he would fall from not being able to keep his balance. Now he is in an electronic wheelchair. He has to use a removable feeding tube because he gets choked on his food. I Thank God that he hasn’t lost his voice yet. According to the Dr.’s it’s only a matter of time before he will have to be put on a ventilator because his lungs will shut down also. He said he didn’t want to have to stay on that though. He is losing the loss of his hands and fingers, now. They talked about setting up the chair so that he can use his teeth to control it. It is so heartwrenching to see my brother in this condition, at such a young age. My Mom and Dad hurts so much for him. Mom said that she wishes it was her instead of her baby. This is nearly unbearable. It’s taken so much away from him. We still have him with us but I don’t know for how long. Is there anything? I read on some website about taking stem cell research to help with a cure. Do you know anything about this? I heard your speech about this website while my husband was watching WWE. Thank you.
I’m sorry to hear about your mother. All of you are in my prayers. May God be with us all.
October 12th, 2009 at 10:10 pm
Dear Nancy,
My mother was diagnosed with ALS about 5 years ago; the disease has progressed to the point that she is now confined to a motorized wheelchair or her bed. She is able to move about and communicate, however, it is obvious that my mother is gone and that she is simply trapped in a body that does not work. To add to her suffering she has recently been diagnosed with Pick Disease which is a type of Dementia. It is very hard to see such a very active person suddenly be stopped by ALS. Thank-you for all that you are doing and you have my condolences for your loss. Our hope is that a cure for ALS is found so that no other family has to go through what we and many others have had to endure.
October 12th, 2009 at 10:06 pm
IT’S BEEN A YEAR AND 2 MONTHS SINCE MY DIED OF ALS SHE WAS THE BEST MOM ANYBODY COULD HAVE. I THOUGHT SHE WAS GOIN TO BE AMONG THE 10% THAT LIVE 10 YEARS OR LONGER. BUT WE WATCHED HER WITHER AWAY LIKE A SANDDUNE IN THE DESSERT FOR A YEAR. SURE WAS HARD FOR ME AND ESPECILLY HARD FOR MY OLDER SISTER BECAUSE SHE TOOK CARE OF HER FOR THAT YEAR. ONE THING I WILL NEVER FORGET MAMA HAD WORKED ALL NIGHT AND HAD A DOCTOR’S APPOINTMENT IN DALLAS THAT DAY AND SHE HEARD THAT MY YOUNGEST DAUGHTER HAD BEEN BORN SHE LEFT THE DOCTOR’S OFFICE IN DALLAS AND DROVE FORM DALLAS TO TYLER WHICH IS AROUND 150 MILES JUST TO SEE HER NEWEST GRANDDAUGHTER AT THE TIME SHE WASN’T ABLE TO TALK BUT SHE WAS BURNIN UP THAT SPIRAL NOTEBOOK TALKIN TO MY WIFE AND I SHE WAS SO HAPPY AND PROUD OF US SHE WANTED TO STAY ALL DAY BUT SHE HAD TO GO, SHE WAS A BIG HELP FOR US SHE HELPED US TAKE CARE OF CHLEUXY (CHLOE) AND DANIA OUR OLDEST SHE’S 7 NOW SHE WAS SO EXCITED TO BE THERE WITH US. I LOVED HER SO MUCH SHE AND I WERE SO CLOSE THERE WOULD BE DAYS THAT SHE WOULD CALL ME JUST TO TELL ME I LOVE YOU SON THAT MEANT SO MUCH TO ME AND TO THE GIRLSI’M JUST GLAD SHE WAS AROUND LONG ENOUGH TO SEE ME HAVE FAMILY FOR MYSELF. SHE’S IN A BETTER PLACE NOW WITH HER MAMA AND DADDY AND MY LITTLE BROTHER CALVIN JUST RINNIN AND LAUGHIN PLAYIN AND LIVIN THE HEAVENLY LIFE. WELL YA’LL TAKE CARE. AND BUILD A BETTER RELATIONSHIP WITH YOUR MAMA OR WHOEVER YOU LOVE THAT HAS ALS.
October 12th, 2009 at 10:03 pm
I lost my mom May 1983 to the battled of ALS for 3 years. She was 50 years old when she passed away. I was not married yet so I lived at home and cared for her. My sisters when come on their days off to give me a break and to care for. She tried so hard to fight the battle but ALS won the fight. It is a terrible disease for the patient and caregiver to have to go thru. I married 5 months after she died and it was a happy day for us and then a sad one. I know she was there for me that day because it rained just before I was to walk into the church. I told my Daddy that it was OK that was tears from Momma in heaven.I miss her very much. She was there when my husband ask me to marry him and I was able to purchase my dress early so I could model it for her. We both layed in her bed and cried together afterward but I know she was there with me. She was not able to be with me when my wonderfull husband and I built our 1st home or when I found out that I was having a baby after 8 years of trying and she was not there with me when I had my second baby after 8 years. But she was the Angel on my shoulder all the way. I get so mad at this disease for taking so many good people. I have good memory from her while caring for her. We spent alot of time in her hosiptal bed talking and crying. I wouldn’t trade that for anything I feel sad for the ones that are battling the disease as I type this. May GOD BLESS each and everyone of you that have a loved one fighting ALS and for the caregivers! Sorry for so long but this made me feel good.
October 12th, 2009 at 9:55 pm
hello!
i found this add on Monday night raw and i wanted to let you know how you feel.
i lost my best friend at the beginning of the school year at central high school in Springfield Missouri. Her name was Hailey Stevens. She was my friend since freshman year. she was a kiltie and on the central dance team. it didnt hit her hard until the end of her sophmore year. our junior year she could talk but couldn’t walk. as senior year rolled around she was hooked up to so many machines i was scared to go near her. the only way we could tell what she was thinking was a machine that was connected to her brain. three weeks into this year she passed away. there was no more the doctors could do for her. i prayed every night for god to help her. and the sad thing is evan though she is gone i know god helped her. he helped her by putting her where she would be happy.I know hailey and your mom are in heaven and are going to do everything in their power to help the victums who als have concerd. haily taught me to value life and appriciate what i do have. she changed Central high school and the lives of others. God how i miss her and i know you miss your mom, but just know that they are no longer misserable or sufforing god is takeing very good care of them. i hope to here back from you i want to help. i dont have money but i can spread the word out to help the als patients now. please write me back. it would be so great to help you. thanx for taking the time to read this…..God Bless You oh and im only 17 hailey was 18.
October 12th, 2009 at 9:53 pm
Hi Nancy
My uncle has ALS and we were surprised because he only had a year but he is going on 4 years. I’m sorry for your lost and i know i will have to go through the pain. But i don’t want others to go through the same pain us me and my family.
October 12th, 2009 at 9:53 pm
Hi Nancy,
I am amazed to read how many women this has affected.I was under the impression it affected more men than women.
My maternal great grandfather passed 20 or so years ago from this horrible disease and my maternal grandfather passed 3 years from it, he donated some of his body parts to research I pray that one day there will be a cure for this so nobody else has to watch their loved one suffer like mine did for 3 years laying in a bed and make the decision to pull the plug and end their suffering.
October 12th, 2009 at 9:52 pm
Hi nancy, I was watching wrestling when I heard you talking about ALS. I lost my mother when I was 15 when she had a short battle with it, She had only had it for 6-8 months But none of the doctors around knew anything about ALS, so by the time they knew what is was it was to late. She died in march of ‘05 at 44 . In may of ‘05 My father who was also 44 died in a freak 4-wheeler accident, but we all know that he had to go to take care of my mother who he couldn’t live without.
October 12th, 2009 at 9:50 pm
HI NANCY
IM A 14 YEAR OLD GURL WHO MOM WAS TOLD THAT SHE HAS ALS.MY MOM HAS 5 KIDS ND GIONG ON 7 GRANDKIDS.IT HURTS ME TO C MY MOM IN SO MUCH PAIN…I AM ALWAYS HAPPY WEN MY MOM LIVE TO C ANOTHER DAY.ND ILL PRAY FOR U ND UR FAM.
October 12th, 2009 at 11:00 am
Hello Nancy, I am so sorry for your lose of your Mom I know how hard it is to loved one. you are amazing women keep up the good work.
October 2nd, 2009 at 11:44 pm
Hello Nancy,
I have wanted to write to you for sometime now as it is coming up on 3 years since my mom died of ALS this October. I still am having a hard time getting over watching her suffer everyday, and that I was the one who had to decide to pull the plug. She was only 66 years old. The scarey thing is that both her father and his mother died of the same thing. I am the youngest of 3 children and I think about what are the chances that me or my brothers will come down with ALS. I don’t know anyone else who has gone through this and I am sometimes alittle scared! I look forward to talking to you and maybe I wont feel all alone. Thank you for having this website.
September 30th, 2009 at 9:28 pm
Dear Nancy,I live in Virginia Beach, Virginia. WE are haveing a BIG fundraiser this Sunday. Please go to J.T.walk 2009. This is for Josh Thompson. This is our 2nd yr. Please look @the J.T.walk 2009 for ALS. Somehow or someway I wish you could talk to Josh’s Dad. Last year he raised over$1,000,000. And this year we have almost reached our goal of $1,400,000. Josh’s Dad owns alot of the hotels at the Va. Beach oceanfront. Our whole community has come together. Everyone loves Josh! He is such an awesome person. He is so kind to everyone! I just wish you would look at our site. WE our building a park on the beach so all hanicapped children can go the the beach and ocean. My name is Bonnie Kettner and Josh is very dear to my heart. I just know if you and Bruce Thompson could somehow talk (Josh’s dad)we could make this even bigger and find a cure!The J.t.walk had 5,000 walkers last year. MY email is bbbvabeach@aol.com my # 757 460-9051. Bruce Thompsons Wk.# 757 491-3000. Kim midjett is his asst. Nancy I am so sorry you lost your mom to this horriable disease. With everyones awareness we can find a cure. Thank you Bonnie Kettner
September 25th, 2009 at 12:37 am
Hi Nancy,
My mom was diagnosed with ALS on August 14, 2008. It has progressed very quickly. My mom is bed-ridden. She cannot communicate and is now sleeping most of the time. I have not heard her voice in over a year and I know she is suffering. I pray that she makes her journey soon to end her suffering.
September 18th, 2009 at 2:18 pm
Hi Nancy and family
My mother has been dianosed with ALS seven years ago. I am a single mother of two wonderful children. My mom is fighting this disease every step of the way. I am so glad that there are others around who are trying to find a cure for this awful disease. If there is anyone out there with any insight that could help I surely would appreciate any advise. Thanks
September 11th, 2009 at 9:09 pm
Dear Nancy . My dad passed away from als about 5 or 6 yrs ago . i wish that on nobody . i know as well as u do that it’s really hard to with . it’s nice to see that someone is trying to find a cure . i would really like to thank you for what you are doing .
September 11th, 2009 at 4:10 am
Dear Nancy,
I received a diagnosis of ALS just two months ago and I am more concerned about how this disease will affect my family than myself. Hopefully, they will focus their attention on working with organizations like yours to help me and others who follow down the same path. I treasure the loving relationships with my husband, two sons and one daughter. I understand what was so special between you and your mother for I’ve experienced it first hand with my own grown children and, now, my grandchildren. I wish you well in your endeavors to keep others – possibly, even me – from the tragedy of ALS. Thank you.
September 10th, 2009 at 6:04 am
You made some good points there. I did a search on the topic and found most people will agree with your blog.
September 9th, 2009 at 11:19 pm
Nancy, Thank you so much for all that you do in the battle to find a cure. I am a 58 year old woman with Bulbar onset and I want a cure. I do everything I can with any research project or drug trial because even if it does not help me, one day it may help others. Hang in there and again, Thanks
September 8th, 2009 at 11:51 pm
Hi, Nancy. I know exactly how you feel. I lost my sweet mother to ALS on February 29, 2008. She was 44 years old. She battled with the disease for almost 4 years. When she was first diagnosed, we knew nothing about it. Our first reaction was, “how do we cure it?” Then the Dr said that it was incurable. There is not another disease as terrible as ALS. My poor mother faught and faught, but the disease won. I think about her a million times a day and would give anything just to talk to her one more time. I miss her so much. Thank you for everything you have done to raise ALS awareness. We will all get to see our loved ones again one day and they will be healthier and more happier than ever! Our mothers are no longer hurting and they are no longer trapped in their diseased bodies. They are with God and you know they are in a special place in Heaven. God bless you and hang in there. I know I am trying to.
September 8th, 2009 at 12:46 pm
Hi Nancy
I to lost my best friend and beautiful daughter Kathy to this divasting disease at the young age of thirty nine.
one year after her dianogis,so i can feel your pain i,m so sorry .
I wish the National Baseball League would have some kind of a fund raiser,ln honor of the great Lou Gehrig,like they have for cancer. and donate i00.00 for every home run hit the day he made his (I’m the luckest man alive speech).on july forth.maybe we could get help from Kurt Schilling.
September 7th, 2009 at 3:49 pm
Dear Nancy,
You are so beautiful inside and out. I’m sure you got that from your Mom. Thank you for all the work you do for MDA.
With love, respect and gratitude,
Derrick
September 7th, 2009 at 1:42 pm
Hi Nancy, Keep up the good work, the fight goes on and with you and Jerry, they will find a cure.
September 1st, 2009 at 5:46 am
Hey Nancy, just wanted to tell you that you are an amazing person and I am so glad you’re going to do the telethon every year. I too have MD, me and my mom, and we are not giving up, you shouldn’t either and i see you’re not. I’m so so so sorry about what happend to your mom, but now she is and Angel looking down on you.
Many blessings to you and your whole family.
August 29th, 2009 at 9:06 am
As my mothers ALS progresses, I find it somewhat difficult to see the light at the end of the tunnel. But I am greatful for the help and support of groups such as this one, and their pursuit to help find a cure. This site is such a fitting tribute.
August 28th, 2009 at 9:06 pm
My heart goes for you. I recently saw you on monday night raw aired 8-24-09. My grandfather had passed away back in 1988 due to als. He would be 76 on Sept 1 if he was alive. When he passed I was only 4. I did some reaserch years ago and found out I had a 15% chance of getting asl. As soon as I get a job I do intend in helping find a cure for asl.
August 27th, 2009 at 5:36 pm
I just saw your appearance on telethon – was very touching and heartfelt. Our mom passed away 15 years ago from ALS – a beloved mom of 11, grandma of 16 and wife of 50 years – she was the best thing in our lives. As you said, the hardest thing was not being able to talk with her – had we only known, we could have taped her beautiful voice and the wonderful stories before we lost her.
August 26th, 2009 at 4:39 pm
Hi Nancy! This is such a wonderful tribute to your mom & a cause so close to my heart. I lost my loving , beautiful wife (age 49) to this dreadful disease April 2000. To this day, I’m still active with ALSA, & will continue to be until a cure is found. My family (sons) are big WWE fans & are glad they’re helping to bring awareness. GOD bless
August 26th, 2009 at 3:03 pm
I heard you talk about this website today on Access Granted and wanted to check it out. My family and I are in tireless support of research and awareness for ALS as we have lost so many family members to this disease. Most recently and dear to my heart was my grandmother. On behalf of her and the rest of my family I’d like to thank you for all you’ve done for the cause.
Kelli
August 26th, 2009 at 2:29 pm
Thank you so much for all that hard work that you are doing to bring awareness to this devestating disease called ALS.My husband Ernie passed away from this disease on Sept 27,2008 and to watch this disease take away this strong,active,hard working,loving man was the hardest thing that I have ever had to witness.I felt hopeless knowing that I could not take away the fear that he felt when he was diagnoised and no cure or medication to save him.
August 26th, 2009 at 1:46 pm
Hi Nancy,
What a wonderful tribute to your mom, and one that will help thousands of others at the same time.
I lost my dad to ALS 20 years ago. He was only 71. Like your mom, one of the most devistating aspects of the ALS was the loss of the ability to talk while the mind was still clear and sharp. As City Clerk in our city, like your mom, he had used his voice and ability to write as his primary ‘professional tools’.
I am pleased to introduce you to work that I am doing, partly in honour of my Dad. This Fall the Fashion Moves Garment Design Competition will be launched. With this we will introduce the concept of functional, respectful adaptive clothing to the Fashion Designers of tomorrow and encourage them to start to create for this community. Through your caregiving of your mom, you will be aware of the daily difficulty the simple act of getting dressed can become. I would love to chat with you about this.
Thank you for starting this organization.
Ruth J. Clark
Fashion Moves
http://www.fashionmoves.org
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.
August 23rd, 2009 at 10:00 pm
This is a wonderful thing, I have been watching everything on ALS for years. I lost my grandmother in 1974 from ALS, before any real treatments were available. She was a true pioneer for this disease, when she died she donated her body for the study of this disease and we found out last year that her remains were buried in the Gulf of Mexico. Continue fighting for the cure of ALS. We still miss you Girgir..
August 23rd, 2009 at 11:32 am
Dear Nancy,
Thank you for all your efforts to raise awareness for ALS and the fight to find a cure. You are an inspiration to all of us who have been affected by this devastating disease. I lost my father to ALS 4-15-09. The past 18 months have been the worst thing I have ever been through in my life. My battle is not over until they find a cure and I am determined to see it in my lifetime. I have a feeling our parents are proud that we are uniting in this effort and that we will make a difference. I couldn’t save my father but I will Never Give Up the fight to save someone else.
August 23rd, 2009 at 10:48 am
Nancy,
My mom was diagnosed a few years ago with a terrible movement disorder Multiple System Atrophy (MSA). This terrible disease also took my sweet southern mothers voice away. I also spoke to my mother on the phone every day and I miss it so very much. I have a 10 month od little girl who will never get to know how wonderful her grandmother is. She cannot write because this disease not only took away her ability to walk and talk but also the ability to control her arms and fingers. I feel so blessed when she has a good day and I can understand the things she is trying to say. The sadness I see on her face breaks my heart. I wish there was more information about her disease for her and us ( her family). Please bring awareness of this disease as another movement disease. It needs a voice out there too. Many doctors aren’t even aware of it. It is so frustrating.
Thank you for sharing your story of your mother. It was so similar to my mom’s illness story…undiagnosed for so long.
- Heather
August 23rd, 2009 at 7:30 am
Nancy, Sorry about your mom. Thank you for doing this. My grandfather had it and it is a nasty disease. My heart goes out to everyone that has been affected by this disease.
August 23rd, 2009 at 12:39 am
I have not been affected directly by family but saw a friend of my grandma suffer from it . I remember how he impacted my life. I’m so sorry for your loss and pray for all the families that are affected by this terrible disease. May we find a cure soon.
August 22nd, 2009 at 9:29 am
thank you so much for doing this,so sorry for the loss of your mom. i am 53 was dx oct.08 with als. it was a shock no were in family is this shown up. i have husband, 3 sons 2 daughters-in-love, 4 grandkids. what hurt us most was i couldn’t draw ss disabily or get medicare. i had worked for 20 years but had be unemployed for the last 10yrs. stayed home and took care of grandkids. ss said they only go back the last 5 yrs., and i don’t have the credits. that has really hurt if the law was changed. if i live to retirement then i can draw thats what they told me at the ss office. god-bless you in all your doing for the als cause we need you. best of luck to you and your family..
August 21st, 2009 at 10:53 pm
Nancy,
My dad was diagnosed with ALS in September of 2008 and passed away 9 weeks ago. I know how you feel. He too was my best friend. Thank you for being a crusader of this horrible disease. Hopefully, the more we get the word out, the more research will be done and a cure will be found. I don’t want any other families to go through what we went through. My dad was truly the best dad I could have ever hoped for. He was kind, gentle, and encouraging. Even on his worst days, he kept his head held high and never complained. I miss him so much.
Thanks for your help!
Diana
August 21st, 2009 at 9:34 pm
Hello,
I just wanted to let you know that you are doing an amazing service by speaking out about ALS. We just lost my father to the disease last Sunday, after he battled valiantly for 2.5 years. He was also 74. Hopefully there will be cure someday soon, so other families do not need to endure the same thing.
August 21st, 2009 at 7:59 pm
Nancy, thank you for honoring your mom and for bringing awareness to ALS. My husband was diagnosed in early 2008 and he is courageously fighting the horrific disease. We have formed “Dwight’s Fight against ALS” and will do our first “Courage Walk” next month. We are trying to start a local loaner closet and provide tangible encouragement to those courageous men and women in our community who are battling ALS. If we all do our part there may be enough awareness and money raised to make an impact on finding a cure! By the way, thank you also for taking time to share your story with Creative Memories. May you and your family be blessed!
http://www.caringbridge.org/visit/djohnson and http://www.dwightsfight.org
August 21st, 2009 at 6:23 pm
Dear Nancy,
Thank you for turning your pain into this beautiful tribute to your Mom. Only good can come from this effort.
Best wishes to you and your family, Chris
August 21st, 2009 at 2:50 pm
Nancy, thank you for doing this. As an MDA Volunteer and Supervisor and a HUGE WWE fan, I am especially psyched that WWE has come on board to help you launch this very important undertaking. The best of luck to you in this endeavor!
August 21st, 2009 at 2:43 pm
Nancy! I’m so thrilled you are joining the fight against this wicked disease! Four of my family members have died from ALS, including my 44 year old mother! Thank you for all that you do!
August 21st, 2009 at 1:17 pm
Nancy thank you in so many ways to relize iam not only one.My husband has ALS we been doing alot of test now they are at the point of stopping. Hope soon can see a cure but i know it wont happen before his time.
August 21st, 2009 at 1:02 pm
Nancy,
I am so sorry for your loss & completely understand your pain. I have lost many family members to this horrible disease starting with my Grandfather in 1973 and the latest was my Aunt in September of 2008. The familial form of ALS is in my family and we have lost many to it. We live every day of our lives with the realization that we too could get this dreaded diagnoses at any time.
Thank you for what you are doing to bring ALS more into the public eye. While I know people have been researching this disease for many many years, it seems that not much progress has been made. So many people don’t even know what it is, or have never heard of it. Maybe with what you and your family are doing that can be changed. Wouldn’t that be a wonderful legacy for your sweet Mom to leave behind.
Thank you and God bless you,
Tammy Piefer
August 21st, 2009 at 12:11 pm
I too saw your segment on Fox &Friends. My mother was diagnosed April/May 2006 and died this past May, at the age of 67. I am encouraged & hopeful that you can garner public attention for this hellish disease. My thoughts & prayers are with you & all the patients/families dealing with this disease.
Heide Welton
August 21st, 2009 at 11:33 am
Dear Nancy,
You were brought to my attention this morning when my aunt called me. She let me know how you lost your mother. My heart went out to you right then because I lost my mother earlier this year too because of ALS. God knows I truly understand what you and other guests faced or are facing with your loved ones. There’s not a day that I don’t remember how STRONG, POWERFUL and INDEPENDENT she was when God allowed me to be bless with having her on earth with me. See, the only thing that allows me to go on is knowing that she’s gone to be with Jesus Christ and seeing my grandparents again!!!! I will lift you & your family up in my prayers. When you’re having super hard times, please remember the fond memories that you have of your mom and know that God is there to help you get this situation when nobody appears to truly truly understand the devastating pain you’re facing. Take care of yourself and may God be with you and your family.
Mr. Carlos J. Bynoe
August 21st, 2009 at 9:52 am
Hello Nancy
My symtoms started over 10 years ago, I have two brothers
that have the same thing, I have lost more then 5 in our family, including my mother and sister. Me and my brother
have done a few motorcycle runs to Canada to raise money and awareness, keep up the work, let me know if there is something we can add to your work. Thanks Dave
August 21st, 2009 at 9:27 am
Keep up the GREAT work Nancy and know that your mommy will live on through you and all you do. God Bless all our friends stricken & battling with ALS
August 21st, 2009 at 9:22 am
Hi Nancy,
I saw your piece on Fox yesterday and wanted to thank you for raising awareness. We are going through this now and it is so hard and so sad. People should know more about this disease that really can affect any one at any time. My wife was stricken when she was 38 and just turned 41 April. She worked out every morning, was in amazing shape and was the picture of health. We have 3 young daughters and they are doing amazingly well. I started blogging about our story back in January after a trip to the Mayo clinic in Rochester just confirmed what the other Neuro’s had said. Here’s a link to my blog. We have tried every “treatment” imagineable and have our theory on how this all started. It’s all there in the chronicle and many people have told me that the blog has helped them a lot both from the treatment side, but also from the personal side. Again, thank you for coming out and supporting the cause publicly. Here’s the link: http://alschronicle.blogspot.com.
Best,
Bill
August 21st, 2009 at 7:22 am
Dear Nancy,
First, I am so sorry about your mother. I saw you on Fox yesterday, and was very touched by what you are doing for other people. I have some information that may be helpful. I am sending a link to a web site about low dose naltrexone. There is a lot of information about this drug which was originally formulated to help drug addicts. But its off-label use has been for all types of autoimmune diseases, and there is an article about its possibilites for ALS:
http://www.lowdosenaltrexone.org/ldn_and_ai.htm
I’m not thinking that this is a magic bullet, but perhaps a way for people to stabelize. I hope this information might be helpful.
All the best,
Denise Rodgers
August 21st, 2009 at 12:01 am
You give us HOPE. God bless you.
August 20th, 2009 at 8:54 pm
My brother-in-law is suffering from ALS and is in the late stages of the disease. He has a 13 year old son who is stuggling to understand this disease that is robbing his father of the joys of life. My sister is struggling to care for him, but manages with the support of many people.Thank you for sharing your story. It is such an encouragement.
Mary Bogar
August 20th, 2009 at 7:30 pm
Nancy,
I saw you on Fox News this morning and know how difficult it is. I have military service-connected ALS. I know the feelings and emotions from a different perspective; through my 7 yr old son’s eyes and those of my wife of 17 yrs.
Veterans with this disease have claims being buried and ignored. We need help with awareness. I have already requested Congressional Inquiry, sent letters to the President, and VA Secretary; only to be ignored.
I only have so much Fight left.
Fox4ALS.com is my fight.
A fellow Veteran’s wife was told, “Why bother with the claim, he won’t live long enough.”
God Bless you for heightening awareness.
August 20th, 2009 at 6:14 pm
Dear Nancy , so happy to hear about your cause in treatment for ALS. Member from my family had this disease and was not diganised until the very end. At the time I had not heard of a physician in Rome who can threat this illness, how I do not know. However I can tell you he treated my husband for prostate cancer in 2008. My husband is now cancer free. He treats cancer as a fungus. You can make contact with him by going to his web site—t.simoncini or cancerfungus.com. If you are interested in talking with him, please contact me through my e-mail. Good luck in your cause to find the cure for this awful illiness.
August 20th, 2009 at 5:16 pm
Dear Nancy,
God Bless you for bringing attention to this horrible disease. My mother died of ALS in 1998 and we miss her terribly. Coincidentally, her name was Betty also. Your willingness to heighten awareness of ALS, continuing research and God’s guidance will hopefully one day bring about a cure. Thanks for your help.
Gratefully,
Karen Sawyer
August 20th, 2009 at 4:14 pm
I am sorry for the loss of your Mother, Nancy. My husband was diagnosed in Feb., 09. He taught school until April, and now he can’t walk or stand, talk so anyone can understand, and has trouble swallowing. He gets his feeding tube placed tomorrow. I am absulutely convinced that the statin drugs he took has something to do with all this. I have talked to others who believe the same thing of their family members who perished with ALS. I hope a lot more research will be done to prove this, one way or the other. The symtoms he experience on statins were the same as with ALS. When he quite taking the statins, he improved completely, and was even able to paint our church, climbing ladders and getting up from the baseboards. That was last summer, about a year after stopping the statins.
I can’t talk with my husband, because I can’t understand him. We are hoping that before too long we will be able to get a communication device. He is quite frustrated about that. Otherwise, his outlook is very good. He is a great guy, and as it was with your mom, he is my best friend.
Keep up the good work you are doing! I hope a cure is soon.
God bless you. Bette Schumann
August 20th, 2009 at 3:37 pm
Beautiful story and Family. We loved Betty!
August 20th, 2009 at 3:09 pm
I, too, saw you on Fox & Friends this morning. I am so sorry for your loss. My father died of cancer in 2003, and I know how painful it is to lose a loved one. You and your family are in my prayers tonight, Nancy.
God Bless You
Julia Cooper
August 20th, 2009 at 2:53 pm
My father was a famous daredevil clown who traveled throughout the United States and Canada from 1951 until 1981. He was diagnosed in 1982 with ALS. He lived until March 29, 2008. He suffered many hardships in his life, one of which was his wife of 28 years leaving him for another man. Through all of this he remained optimistic that he could beat this disease. He had such a great sense of humor and was able to laugh and joke about everything. To the very end, he lived alone and cared mostly for himself. He was still able to talk and eat and manuever in a wheel chair. He was such an inspiration to everyone.
At the end he believed he had beat ALS and that could be true. I miss him so much. My life will never be the same without him. MDA did alot for him and I am truly grateful. Mostly I am grateful that of all the Dad’s in the world, I was blessed to have him as mine.
I hope there is a cure to be found for this and other neurological disorders.
August 20th, 2009 at 1:41 pm
Dear Nancy,
I saw you on Fox & Friends this morning and think what you are doing is wonderful. The advances and understanding of this disease are probably for more advanced then when my aunt was diagnosed and lost her battle with ALS in 1977. Within six months of her being diagnosed she was gone. I was very young at the time (9), but remember very good times with her. She was the only person that every babysat me and my brother. She was such a robust and outgoing person and to see her deteriorate in a matter of 6 months is something I will never forget. To go from someone who took care of us to having to be taken care of will be with me for the rest of my life.
The disease if horrible and I hope that through you and your work a cure will be found and others won’t have to go through what we have had to go through.
Good luck and God Bless!
Donna Maddie
August 20th, 2009 at 1:22 pm
I am 56 years old, and have been battling ALS for the last 12 years. It’s people like you in your position that helps get the word out about ALS. My condolences on your loss. Thanks for fighting the fight for the rest of us.
-Kathy
August 20th, 2009 at 1:04 pm
I ran across you speaking on Fox this morning, odd because I am not a regular Fox viewer, & was touched by your story of your mother. It reminds me of my own mother & our family’s stuggle with ALS. She was diagnosed, undiagnosed & rediagnosed during the almost 2 years when she had symptoms. Not that it matters since there is no cure or even effective treatment for ALS. The terrific doctors Mom saw were reluctant to give name to her disease because they hated to pronounce the death sentence. My parents celebrated their 50th wedding anniversary just about a week before Mom died in 1994. Her 11 children miss her always & see her influence reaching out to grandchildren & now great-grandchildren. We participate in the ALS Association’s Walk to Defeat ALS in both St Louis, MO & Springfield, IL because, as you know, there has to be a way to stop this disease that stole our mothers’ mobility, speech & ultimately lives. Thank you for making this a more public fight.
August 20th, 2009 at 12:52 pm
We’re with you, Nancy!
Hugs, Charley
August 20th, 2009 at 12:40 pm
Nancy,
I saw you on Fox & Friends this morning and I am sorry for your loss. What a wonderful tribute to your mother! I also lost my father to ALS in October 2006. It took a while to diagnose his symptoms too – weakening voice, hand cramps, limited range of motion. He died 10 months after the doctors diagnosed him. My father was not only a great dad but he was a great friend. I miss him terribly. Thank you for bringing attention to this disease.
August 20th, 2009 at 11:54 am
Nancy,
My thoughts and prayers are with you as you not only have lost your best friend and mother, but that through your tenacity to raise awareness for ALS, a cure will be found so other families will not suffer as you have.
Thank you for your courage and your voice on this deadly disease. May God bless you!
August 20th, 2009 at 11:48 am
Nancy –
Your courageous decision to publicly share your personal story continues to inspire countless families fighting ALS, and all of us working at MDA to eradicate this horrific disease. Thank you for all you have done to bring awareness and hope. You are so deserving of being honored in October at the Tradition of Hope Gala for MDA’s Augie’s Quest. Betty’s Battle will bring your families dedication to an even higher level – thank you for making a significant difference in the fight to end ALS.
August 20th, 2009 at 11:44 am
Nancy,
I want to tell you how proud I am to have you as my daughter. You have done a great job in assisting MDA in its efforts to eradicate ALS and all the other diseases under MDA.
MDA was there, at all times, to help our family through that tough time and I am really proud that you,as my daughter,are giving of your time to help MDA find a cure for this most insidious disease that took away from us one of the most wonderful mothers, wife and friend on this earth. I hope that they will find that cure soon so that those other families out there won’t have to suffer through what our family did.
I know that your Mom is looking down at you righ now and saying “thats my girl”.
Dad
August 20th, 2009 at 11:42 am
Dear Ms. O’Dell:
We’ve never met, and most likely never will, although we are both South Carolina natives who grew up along the Grand Strand area (North Myrtle Beach for me). You are an inspiration for all people, and I salute you for the love you have and will always have for your mother and family. May God bless you with your efforts with the MDA against ALS.
Sincerely,
Jerry Vereen
August 20th, 2009 at 10:43 am
Dear Sweet Nancy-
Thanks for the e-mail with this link. I wasn’t planning on crying this morning, but just can’t help it. Your mother will always be remembered as one of the most wonderful moms ever. I remember being so scared to spend the night away, but Betty always made me feel so loved, that I got over the fear very quickly. I can hear her voice calling your name right now. She always had a wonderful sweet snack for us when we got to your house. I called her about 3 years ago for her Chow Mein Noodle recipe. Oh so good! I am very thankful that I knew her. Even though there are tears in my eyes, there is a big smile on my face. She definately knew how to make people smile.
I think all that you are doing to raise awareness is awesome. I do hope that a cure is in our near future.
Much love- Lane
August 20th, 2009 at 10:43 am
I understand what you are going through. I had a family member die of this disease, at the time I was not aware of this physician in Rome who can treat this illness.
I do not know the exact treatment, he treated my husband of prostate cancer, who is now cancer free. He is a wonderful physician.
Please cantact Dr. Tullio Simoncini, his web site is t.simoncini or cancer fungus.com.
Good Luck.
August 20th, 2009 at 10:42 am
Nancy-Thanks. I lost my mom to ALS 2 years ago this month. Luckily her neurologist was affiliated with the MDA Clinic in OKC and we had a very quick diagnosis. Symptoms started in July. Diagnosed “definitely” in November. I brought her to live with me and was her only caregiver. She died Aug. 4. Horrible disease but I cherish those 10 months I had with her. My daughter is now going to med school to be a neurologist and will do research. Maybe she’ll be able to find a cure! This disease needs more funding and more attention.
August 20th, 2009 at 10:01 am
What an extraordinary tribute to such a deserving woman. While I never had the privilege of meeting Betty in person, her spirit and charisma have impacted my life beyond measure. This beautiful website tribute is just one more way that Betty – and her loving family – have made a difference in the world.
Betty’s triumphant struggle against ALS has been transformed into a lesson in hope and courage through Nancy’s philanthropy and awareness campaigns. Thank you for partnering with MDA – and the tens of thousands of people in MDA’s ALS community who depend on MDA for help, hope, and progress.
Betty’s Legacy – her family, her spirit, her generosity – is bettering lives and bringing hope to thousands of families every day. Thank you for sharing your mom with the world… seems that Betty’s daughters are as incredibly selfless as she was… Thank you.
August 20th, 2009 at 9:17 am
Nancy,
Thank you for raising awareness about this awful disease. My mother who was also my best friend died a few years ago from ALS. Sadly, although she was having symptoms for over a year, she was not properly diagnosed until 3 1/2 months before she died. It is very devastating to watch someone struggle with a illness when doctors tell them that they can not find anything wrong.
I saw you this morning on Fox and Friends and your story brought back so many memories for me. What can I do besides donating money?
From my heart I thank you for what you are doing.
August 20th, 2009 at 9:06 am
dear nancy thank you so much for what you are doing.i had an uncle who passed away from als .it was a sad time for us and i was with him to the very end.we had no hope.but now you are giving people with als hope with your wonderful work.your mom would be so proud.thank you so much.
August 20th, 2009 at 9:01 am
ALS has needed someone to bring this terrible disease to the public’s awareness for a long time.
One of my dear friends is in his 8th year battling ALS. We installed a home automation system that allows him to communicate and to control his environment. As such it he enjoys a quality of life that most ALS victims have given up on ever having. Steve’s ability to interact with things like his TV, Music, lighting, and house temperatures has added to his desire to live longer.
I visited him recently and was amazed at how someone who can not speak and can only move his feet was able to carry on a conversation with us.
Take a look at this link and maybe you can help spread the word that ALS victims can still maintain interaction with their family, friends and environment.
http://www.setnetpro.com/steve_smith-1.asp
I am not interested in this design as a profit center. Instead, I believe his story and the story of how technology can improve his quality of life must be told. In so doing, others will realize hope that would otherwise be lost.
The system installed at Steve’s home uses commonly available products that can be installed by anyone with a little DIY spirit and is not just for the wealthy.
In the story you will learn of many volunteers who helped on this project. I pray that this spirit can be promoted with your help!
God Bless you!
August 20th, 2009 at 8:57 am
Thank you for all you do for ALS. I lost my mom to this horrific disease on May 25, 2000. There was a huge sense of peace on that day…because her suffering had ended. But I still live my life as if she is still here with me. This disease is torture…for everyone. I’m disappointed that I have never been able to get as involved as you…I hope someday I will have the courage to do more. So I am truly grateful for all you do, my life has never been the same without my mom…so I am very sorry for your loss.
August 20th, 2009 at 8:55 am
Thanks for your courageous fight against this horrible disease. My husband, who is now almost 42, was diagnosed in 2001 and is still fighting every day. We have 3 children and this does affect the entire family. Please continue to bring awareness to this in hopes that more $ will be spent on research and developement of medicines to at least help the effects of this disease.
August 20th, 2009 at 8:30 am
I know how you feel I lost my mother Esther Conway to ALS Feb. 2008 my mother as your mother was my best friend also. I’m lost everyday without her here. Mama’s ALS was caused from statin drugs I completely believe that. I don’t know what we would have done if it had not been for ALS Assoc. And MDA they were so helpful at no cost to our family.
I must say my mother was the most loving women I have ever known , I believe that you and I are the luckest people in the world to have had our special mothers. I our lives. I feel the greatest gift that my mother ever gave me was allowing my sisters and myself to be her caregivers. I live everyday in her memory.
Thank you for what you are doing for a cure.
August 20th, 2009 at 8:28 am
Nancy – I just saw you on Fox & Friends and waited ’til the tears cleared to write to you.
I lost my dear sister-in-law to A.L.S. a short while ago. When I donated (on your site), I couldn’t find a line for a dedication to her (e.g. “in memory of”). I guess I’ll just have to make an additional donation next month if I can learn how to include her name.
Sincere thanks for your monumental work. At age 70, I am a brand new fan of Nancy O’Dell.
August 20th, 2009 at 8:17 am
Dear Nancy:
Thank you for what you and Betty’s Battle are doing to raise
ALS awareness; I still have tears about your loss. Mom’s are special, yours more so as a best friend too! You have my family’s support and prayers. Here’s to a cure and treatment.
Jeanne
August 20th, 2009 at 8:15 am
Reading about your mother was like reading my grandmother’s story. She was known for her cooking. She lost her voice, and for almost a year was treated for allergies. A specialist finally diagnosed her with ALS in May of 1993. She celebrated her 50th wedding anniversary with my grandfather that month. She died that September. We still miss her so much. Thank you for what you are doing. You are in my prayers.
August 20th, 2009 at 8:09 am
Dear Nancy,
My sincere condolences to you and your family for the loss of your mother.
My father died 4 years ago of ALS, it took 1.5 years for him to get diagnosed.
When he finally was diagnosed with ALS ,it was too late and he died 6 months later.
It’s a cruel and devastating disease.
Thank you for starting the battle against ALS.
August 20th, 2009 at 8:09 am
I’m so sorry to hear of your mother’s passing to the horrible disease, ALS. My dear friend, Tim McGehee passed away from ALS in March 2007. He was only 43 years old. I know how hard it was to watch your mom deteriorate right before your eyes. I stand with you in your fight to find a cure. I have been a huge supporter in the Baltimore, MD and D.C. area. If you could ever make it over here, it would be an honor to meet you. The next schedule walk is Oct. 17th at Druid Hill Park in Baltimore, MD.
Thanks for all that you have done and are doing to raise awareness and money to fight this devastating disease.
August 20th, 2009 at 8:08 am
Nancy,
Thank you for raising awareness of ALS. My heart goes out to you and your family. I can empathize with you, because I lost my father in 1991 to ALS. Let’s hope there will be a cure in the near future so that others will not endure what our families had to go through.
August 20th, 2009 at 8:08 am
Nancy,
I am sorry to hear of your loss. I also lost my mother to ALS when I was nine years old. It is a horrible thing to watch a loved one go through and something that no family should have to experience.
If there is anything that I can do to help your cause, please contact me. I, too, would love to see an end to this awful disease.
Leslie
August 20th, 2009 at 8:06 am
My heartfelt sympathy goes out to you and your family…We lost my Brother-in-law 10 years ago to this horrible disease..He was only 35 yrs old and left behind my sister and 2 small children, two loving parents and many other family and friends…it was a very difficult situation..but with the grace of God we all got through it…We donate to ALS Foundation and will continue to do so. I will pray for you in your quest to help find a cure….Thanks for what you are doing…
August 20th, 2009 at 8:05 am
I was hopeful to see your website. My nephew, Blain Sutton, who is just seventeen, has ALS. My heart is broke for him and his family! Thanks for all you are doing.
August 20th, 2009 at 8:05 am
Dear Nancy
My Dad passed away last year from a 8 year battle with ALS. It was so hard to see my Dad suffer (a tough Marine from WWII.) Thank-you for taking on this terrible disease. I am hoping that this will bring a cure so people don’t have to suffer from this terrible disease.
August 20th, 2009 at 8:04 am
Thank you for starting this foundation and research. My family have had six members to die from ALS and we currently have one 32 year suffering with it. Her father died from it a few years back. It’s a terrible disease.
August 20th, 2009 at 7:59 am
Nancy- You are such a lovely person. I’m so sorry to hear about your mom. God bless you and this foundation. ALS is a terrible disease.
August 20th, 2009 at 7:58 am
Nancy, thanks so much for bringing this to the forefront! My father was diagnosed over a year ago and we have watched him fade a little more each day. I pray that a cure or a treatment will be found soon.
August 20th, 2009 at 1:21 am
Nancy,
I have no doubt your Mom was as proud of you as you were of her and that she is looking at you now in awe. As you put your energy, time and most of all love into Betty’s Battle to honor your Mom, you’ve given the ALS community truly something to hope for and hope with.
I can’t thank you enough for all you’re doing to help MDA spread awareness and raise invaluable funds to one day SOON find a cure. You’re a beautiful inspiration inside and out.
August 19th, 2009 at 9:04 pm
Nancy,
I have heard how incredibly close you were with your mother, and I offer my deepest sympathies following your loss. Thank you VERY much for the work you do with MDA to raise awareness of ALS. Betty’s Battle is inspiring and I wish you tremendous success – thank you for all that you do in the fight against ALS!
August 19th, 2009 at 8:13 pm
Nancy – Thank you for all that you do to raise awareness of ALS and working to find a cure. Betty’s Battle is such a tribute to your mom’s fight against ALS.
August 19th, 2009 at 7:50 pm
Dear Nancy –
I’m in awe of your strength in helping us wage the battle against ALS. When we met last year and shared our personal stories of losing our beloved parents much too soon (my dad recently had died from complications of a virulent form of prostate cancer at age 71), we instantly formed a bond. I was especially struck that, at that point in time, although the wounds from losing your mom were still raw, you still mustered the courage to join with MDA in our all-out assault against ALS. I’m inspired by the launch of MDA’s Betty’s Battle. With your efforts, I have faith that ALS will be defeated!
Looking forward to seeing you at Telethon! Thanks for all you do!
August 19th, 2009 at 7:08 pm
Nancy,
Since the day your mom was diagnosed to the day she passed, it was inspiring to see the amount of support you and your family offered not only to her, but to others living with ALS. Not a second went by that you were not 100% focused on the next step. Betty’s Battle is a testament that this dedication has remained strong and unfailing.
The impact you’ve had on others living with ALS is incredible. Even after their initial ALS diagnosis, people light up when hearing about your involvement with MDA’s ALS Division. Betty’s Battle will be the next step in raising crucial awareness and funding for the devastating disease that ALS is.
Thank you for the continued support. I look forward to the great hope this will bring to the ALS Community.
For the Cure,
Andi Sass
August 19th, 2009 at 6:50 pm
Thanks for all you do to continue to raise awareness and money for ALS. Launching Betty’s Battle is a special way to honor the memory of your mom. Together we will find a cure!
August 19th, 2009 at 6:39 pm
Nancy,
I am so sorry for the loss of your Mother. What a thoughtful legacy you are building in her honor, she would be so happy to know that you are providing a way to raise awareness for the continued fight against ALS. Thank you for all you do for MDA, it is much appreciated.
August 19th, 2009 at 6:21 pm
Our condolences to you and your family for the loss of your mother, Betty.
Thank you for your efforts to raise awareness of this terrible disease. Your personal experience with this disease will surely inspire others to join in the fight to fund treatments and cures for ALS. Each day brings us one day closer to eliminating it.
August 13th, 2009 at 2:36 pm
Nancy,
I offer my sincere condolences to your family. Losing a parent is never easy. I hope that MDA Betty’s Battle is the driving force in reaching a future without ALS. Your efforts thus far are to be commended. Your mom would be proud.
Thanks again for all you do.