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It’s been a few decades. I read your story in the most recent issue of Academy Magazine and just finished making my way through your Website. Your good humor and determination to make a difference are quite impressive, and it’s clear that you have a wonderful partner in Suzanne to accompany you as you touch and impact so many individuals. I wish you continued success in your journey.
Hello! I just watched your story on WTAE and I am so moved and so emotional about this, especially right now. My best friend from junior high, Tina Venderlic, was just diagnosed with ALS about 3 weeks ago. I am totally devastated by this news and I feel so helpless. I want to help her but I don’t know what I can do. For this story to be shown on the news this evening is so ironic because this is Tina’s husband’s birthday. He is just 57 and Tina was 53 on January 10.
Tina had been working at Penn United in Saxonburg for the past few years and carried insurance for both of them. She is now unable to work and her husband has had heart problems over the past few years. I am currently working only part-time and don’t have insurance myself, so I know the worries of this situation. I am unable to help them financially, but want to do whatever I can to help.
Tina and Mike live in a large house on a hillside in Freeport and may have to sell their house because they don’t have a bathroom on the first floor.
I am desperately looking for some way that I can help Mike and Tina. Any suggestions would be so appreciated and welcome. Please let me know if there is anything I can do through your organization to help my good friends.
Thank you so very much.
Just watched your families story on the news. It struck a cord with me because I live at home with my father and my mother, whom was diagnosed with ALS almost 3 years ago. I just wanted to say thank you. Your story really showed the struggles a family must go through on a day to day basis. But it also showed how it strengthens a family. It is a team effort on all accounts. Also, cheers to your efforts in raising money for families dealing with this disease coming from lower income households. Seeing is that is very close to my situation, it brightened my mood to see that there are people battling against the disease by giving so much. Prayers and good vibes to you Suzanne and Neil, and the rest of your family that was impacted by this unfortunate turn of fate. Thank you both again.
Neil my mother told me to watch the news tonight. I live in northeast Ohio and my boyfriend’s mother was just diagnosed with ALS. It seems to be moving very quickly, but your positive words were an inspiration. We would appreciate any advice or help in any form. I know I can learn a lot through your wonderful organization.
Your story is truly inspiring! God Bless you all as you fight this personal battle while giving of yourselves to so many! Our family lost our beloved Judy in 2011 after a short battle with ALS. There was some speculation that her “atypical” case was triggered by taking Crestor (statin drug) for high cholesterol. Have you all heard any discussion on the relationship between the two? Thank you again for all you’re doing to help others as they travel this journey.
First off I want to thank you for all you do to support ALS. My wife was diagnosed with ALS in 2010 and her battle ended August 2012. She never lost her positive outlook on life and always had a smile. I learned of your website watching the news and since I lived with this horrible disease for over 2 years I do have an idea what you are going through and my heart goes out to you and your family. My advice to you Suzanne is to try and stay ahead of this disease. I read once about this is to plan for the worst and hope for the best. If you are looking for more ideas on what to do to help battle this feel free to email me. A previous blogger asked what they could do to help her friend, just be there for her even if it’s just to sit with her and always be patient with her. Patience is one of the keys for the caregivers.
I came across your story on WTAE just last night and wanted to write and thank you for sharing your journey, You have brought light and truth to a disease that has personally touched my family. My brother lost his battle to ALS in September, 2012 at the age of 42. My brother’s wife, 2 children, our family and friends understand all too well your courage. I have witnessed the love and support of so many and it is my deepest hope that we can find a cure. Please know that you are an inspiration and I am forever grateful for your willingness to give a face to this disease and help others to understand. Hope equals cure. You and your family are in my thoughts and prayers
The Alexanders have a big place in my heart! I so admire your openness and courage as you face ALS together. I think about you often and wanted to let you know that.
I hope that our paths cross again soon.
Hi Neil and Suzanne, I just finished reading S’s latest blog and want to remind you that there are people all over the place – on the outer fringe of your lives, like me and Todd’s friends at the Builders Exchange – who are keeping you in our thoughts and prayers. I was fortunate to be at Neil’s presentation to his high school last fall and his interaction with the students was fantastic: a true connection. Thinking of you in Columbus, Cathy
Dear Neil and Suzanne, You both are so inspirational and that you derive such strength and peace from my childhood home means so much to me and my family. We couldn’t have asked for better stewards of our home than you and your beautiful children. Neil’s journey has been in my daily thoughts since I first learned of his diagnosis. Your courage is admirable; your willingness to share with all is extraordinary. Thank you
To all the LiveLikeLou team, you’re doing a great job. The facebook posts are excellent. I’m wondering if there might be baseball hats and other merchandise to support the org. Thanks for everything. Keep up the good fight, and God bless you.
The highlight of my weekend in Pittsburgh was in meeting you and your family. I’ve come home with new thoughts for my remaining time. Coming up on eighty my thoughts had been what will I miss. Today I am more about what I can do for others while I am here. I have heard of an organization that distributes hand knitted warm blankets for sick children, than there is knitted hats needed for new born babies. I hope to spread you story of an unbelievable courage and get friends aboard as donors to Livelikelou.org. I would say God Bless but I think he already has.
Neil and Suzanne: It was so nice to meet the two of you this morning. God has really blessed you with such remarkable courage and strength. As I shared with you my brother in law, Tim Grose, was diagnosed with ALS in 1997. I plan to share your story, your website and your mission to find treatments and possibly a cure for this disease with Tim. Surely he needs the encouragement as well. Also, what a fine job you’re doing as parents during such a trial. I will pray for you, your mission and your family and also plan to contribute. May God watch over and bless you and your lovely family.
Neil and Suzanne, I just came upon your website through a google story link. I too have been diagnosed with ALS. I was diagnosed in November 2012 at the age of 48. I too have 2 children. One is 18 the other is 8. I am a Chicago transplant living in the Dallas area, which seems like worlds apart form western PA. Notwithstanding the geographical and any other differences, watching the video and reading the comments on your website instantly brought me a sense of brotherhood with Neil. I am not sure what support or understanding that I may be able to offer, but I would be remiss forever if I don’t at least extend a hand of kinship. If there is anything I can possibly do to help please feel free to contact me. If it is a simple phone call to chat, email or letter exchange, or any help I can offer to your organization I would be happy to do whatever I can. My most sincere best wishes to each of you and your family. God bless:)
Livelikelou website has been a tremendous source of support over the last several years as my brother has battled ALS. Unfortunately he lost his battle in 2013 but he fought a valiant battle and taught us all so much about life. I have found great enjoyment by following the adventures of the Livelikelou baseball hats and am wondering if I would be able to purchase one or more to promote awareness of ALS.
Prayers and Peace,
Just sayin’ HI cuz I was thinkin’ of yunz…..it’s so grand to not be anonymous any more (grin)….
Hello friend! We are so glad to have met you and so appreciative of your support!!
John T. Kiss, my beloved husband passed away on August 31, 2013 when he lost his battle with ALS. Thank you for livelikelou.org!
We need to stop this monster!! My husband was like Lou deciding to live by a plaque we purchased and put above our fireplace: Don’t Count the Days, Make the Days Count”. I miss him so very much! Praying for a Cure!! Jeanne Kiss
Hi Neil, Suzanne, and family. I once again was so inspired with your story, as presented by WTAE. My thanks to all of you for sharing, and teaching Western Pennsylvanians, and the world about ALS.
The help you are giving through Live Like Lou is so wonderful!
My mom, Pam was diagnosed with ALS in 2004, and lived without hate and self pity, and kept her beautiful youthful smile until Christmas Eve 2009. She was 62.
I have to say that the Alexander’s are an amazing couple and after watching Life with Lou, I gained a sense of hope that I had lost. I have been affected by Als since I lost my grandmother to it when I was 7. In my teens I lost my mother and my aunt to it and this past June my sister lost her 3 year battle with it. As I approach my 50’s, I have been finding myself in somewhat if a panic thinking and almost believing that my life is nearing its end. I have two sisters that, thank goodness, have not been stricken, yet it seems all the women in my family that have been stricken are all blue eyed and I am the next in line. After watching the program last night, I am hopeful and going to try and remain optimistic. I wish there were a way that I could help, if there is something I can do, if there are studies that I could join, maybe there is something lurking in my DNA that could be found that could contain some answers. I’d be happy to participate in any way. God bless The Alexander’s and all who endure the battle if Als.
I am Julie Mink (Ignacio now.) I did Suzanne’s nails at Eclipse Studio in Blawnox some years ago. I must first say to Suzanne that you helped to change the lives of a family and future generations. You loaned me the book Homnivores Dilema and shortly thereafter I read In Defense Of Food. We now live in Ct and have goats for milk, a garden and chickens for eggs. I even make my own soap and shampoo. Maybe this year we will raise some broilers. Secondly, your story is touching and all too familiar. Two out of 4 of my husbands’ uncles have died from ALS. So far his father has not been affected either. Ignorance is bliss, so my research about how this could impact our family genetically is nil. Every time one of my husbands 2 brothers falls or has an issue we wonder.. could it be…? Love to you and your family. I will check out WTAE now. Julie Mink Ignacio.
Hello Neil and Suzanne. I would like to thank you for getting information about ALS out into the public eye. My Mother was diagnosed with ALS and fought a very courageous battle herself. I remember the day she told us that her doctor wanted to know if she needed counseling or therapy to help her through this tuff time, and she said, ” no, I accept what is happening but I think my family needs some help. That was my Mother, always us first. We asked her if there was anything she wanted to do before she got too bad and she said she and my father had always lived their lives making sure they did what they wanted and lived out their dreams even before she got sick. She was also surrounded by a tremendous group of friends and family. I do have to admit that she was right, I always thought she would beat this disease. She always was a fighter and she joined every study she could find to help find a cure. I just wanted to encourage you to keep up the good work. I will continue to pray for you and I commend your strength.
Thanks Valerie. We are sorry for your losses. Stay strong and optimistic!
Hi Julie – So glad to hear your update and so sorry that ALS might be in your family. Sending you love!
Thank you Jackie – We are grateful for your kinds words.
Dear Suzanne and Neil,
My wife and I were very inspired by your presentation on Channel 4,”Live Like Lou”. I have an atypical form of ALS, called Progressive Muscular Atrophy. My wife sounds just like your Suzanne. She is very optimistic and keeps me focused on life and living each day to its fullest.
Like you, we believe in giving back to the community and feel your organization is a perfect way for us to help. We would like to contribute to Live Like Lou by having a fund raiser in April. We have a store, Jenn’s Jems, inside the Pittsburgh Public Market where we sell mosaics, jewelry, shirts, and other accessories that we make and design. We would like to make a special mosaic just for Live Like Lou and would like your permission to do the fundraiser and promote it.
If you would like to see our work, please visit us at the Pittsburgh Public Market (on 2401 Penn Ave, between 24th and 25th) and see our website. I can be reached at 412-334-7829.
I think that it’s wonderful how you’ve created this website. It’s true that Abby, and the rest of the Alexander family are one of the best families living on earth. I just want to say that I hope Mr. Alexander (Neil) lives a very long life, which he deserves to. I also want to say that I’ll always support you guys and I hope you’re ok Mr. Alexander!
P.S. I know someday there will be medication for this disease.
Hi Brandon – thank you for your nice comments and support! Mrs. Alexander
You’re so welcome Mrs. Alexander, you totally deserve it! 🙂
My Employees Association at work is planning a golf outing to raise money in honor of my niece ( also an employee) who was diagnosed with ALS in February. I am looking for personal name and phone number of someone within your organization to speak to regarding making a donation. Any help you can provide me would be greatly appreciated. Your families story has surely touched so many other families like ours who are faced with this illness. God Bless you,
Reading the comments and updates on Suzanne’s blog was really inspiring. God bless the Alexander family.
My uncle Edwin had ALS. He was an inspiration to us as you are, to so many. God bless!
My children and I accepted the ALS ice bucket challenge. My sister is a teacher at FCHS and we attended FCHS as well. She encouraged me to make my donation locally instead of the national ALS association, which we know is a fine organization. I am proud to support a charity in my hometown and love your message and perspective!
Thanks, Neil. I saw your video describing how Lou and now you acknowledge daily how people have helped you. I feel better now that I’ve started doing the same. I have a reminder on my desk to do so that I can’t miss seeing. Al
I was thumbing through a copy of The Pittsburgh Foundation Annual Report 2013 and read the article, “Facing Adversity: LiveLikeLou Hits Full Stride,” telling Neil Alexander’s story. With the ALS ice bucket challenge currently involving so many people (including members of my own family), I was preparing to make a donation to the ALS organization. I am so grateful that I came across the article and have decided to donate to LiveLikeLou. I pray for God’s grace for ALL affected by ALS and applaud Neil Alexander for turning a devastating diagnosis into something that can help others out.
My husband was diagnosed in Charleston,WV with ALS in July of 2010 and I grew up in the Pittsburgh area. My brother is biking in your fundraiser on October 4th (which happens to be my husband’s 53rd Birthday) to raise money. Our schools are challenging each other (we are teachers and administrators in different counties) to raise money for your event! Thank you for being an inspiration to everyone involved with ALS. Let’s find a cure together!
Neil and Suzanne,
My name is Meg Huwar and I am on the Board of Directors for Chapel Gate swim club. We are doing an ice bucket challenge next Monday (Labor Day) at 1pm for any pool member who would like to participate. At that time we will be collecting donations and would like to donate them to your fund. We would also like to extend an invitation for your family to be there and of course if either of you would like to speak for a few minutes you are welcome. Feel free to reach out to me at firstname.lastname@example.org or 412-848-8822.
Thank so much!
Hi Suzanne and Neil,
We wanted you both to know that our family’s donation for the ALS “ice bucket challenge” is going straight to Live Like Lou! This is the first time that we have visited your site and are so inspired by your bravery and love. We will continue to pray for the four of you:)
The McLaughlin Family
Neil, Inspired by what you are doing. Hefren-Tillotson will always be the best place in the world to work, a true family. I was called to do the ice bucket challenge by a family member, and am donating to Livelikelou.org. Take care. Heather Bedell
Was just scrolling thru these wonderful notes & found a 2013 from yours truly which means I’ve known you folks a year! Changes have happened to all of us but thru LLL I know we’re all in this together; whatever it is…thanks for YOUR support in getting ME to Live Like Lou! Please remember, and never forget, the good and the difficult vibes go both ways you to me…me to you…& ALWAYS with LOL… 🙂
Was just reading your update. Have been following since knowing Neil from years ago when he came to Blair Medical with Hefron Tillotson. Just want you to know you and family are in my thoughts and prayers. YOu are such an inspiration.
I generally wouldn’t speak for an entire community, but in this case I feel confident that Granville, Ohio would echo my sentiments. Thank you for coming to Granville and sharing your story. You and your families approach to this unbelievably difficult circumstance is inspiring. Based on our short conversation, I know you’re a baseball guy so I plan on taking my new LiveLikeLou hat to as many ballparks as possible and, of course, I’ll send photos for your website. Keep fighting and I hope to visit with you again on your next trip to Granville.
As I watched Eddie Redmayne accept the Oscar for portraying a man living with ALS, yet continuing to use his gifts to better the world, I am reminded of Neill who is doing the same. Suzanne’s recent blog spoke about breathing and the process involved with what we simply take for granted. It is humbling to know that something typically involuntary, is now a concentrated effort for Neill. I met you both with John Frates at a Pirates game and wanted you to be aware that Pete Frates has recently succumbed to the tracheotomy and has experienced some complications as a result. He has had to have two procedures (two openings) due to a bleeding issue with the first. He has reached the fork in the road and it has been somewhat of a nightmare or rather a “knife” for them. I am certain there are lessons learned which I hope can be shared. I continue to support the efforts for a cure and certainly any advances in prolonging the quality of the life of someone living with ALS. I am grateful for knowing both you and the Frates who remind me every day to live thankfully and optimistically.
Sorry to hear of Neil’s passing,I believi God will give Neil a hand and tell him to rise up and walk In a new and wonderful place. Philip Akin love to all the family. Christ said blessed are they that mourn for they will be comforted.
My heart breaks for you, and my thoughts and prayers are with you all. I lost my dad to ALS four years ago, and I still miss him desperately and think of him every day. Your contribution to fighting this crippling disease, and unflagging optimism and strength is truly an inspiration. RIP Neil… You will be missed
Thoughts and prayers are with you all. My son had cancer as a child and through this we always said “God has a plan and it is not mine to understand. It doesn’t mean I have to like the plan but know that only good will come come of it.: Life is a journey and the reward is everlasting life in the arms of God.
Dear Susan & Family
I’m so sorry for your lost. I will miss Neil a lot. I will continue to fight this fight against ALS. knowing Neil has made me a better solider in this battle. We are doing this for the next generation so no one will ever have to be diagnose with ALS again. The ALS community has lost a great warrior. He will be missed.
Dear Susan & Family:
In your sadness and loss, you have found strength and embodied the triumph of the human spirit.
I have not had the privilege of knowing you and Neil personally, but his words and this foundation are the embodiment of his and your spirit.
I only learned of Neil vicariously because of a common connection with Columbus Academy, but Neil’s story and legacy resonates with me because my grandmother died of ALS many years ago when I was young. I still recall the awful and unyielding progression of the disease.
Please keep up the good work of the Foundation.
Suzanne, During this time, there’s probably no “rush” for you to do anything. So maybe take it easy and try to focus on whatever you do.
Dear Suzanne: I just read of your recent loss. You have been on my minds daily as I still have Lindsay’s email’s regarding the Pittsburgh Foundation in my email at work. I have your family postcard picture posted on my bulletin board along with my family pictures. It has been a year, May 9th that my niece, Jackie passed away. We all have been so very blessed with wonderful memories. My sincere sympathy to you and your family. As I have learned along time ago when I was widowed at 23 with an 8 month old infant son, memories never die! God Bless you as you continue to work towards finding a cure for ALS!! With much sympathy and respect, Karen
I have not gotten on LiveLikeLou for quite sometime and I am so very sorry to hear of the passing of Neil. May God be with you and your children and Bless you in your continued fight in finding a cure for ALS.
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