Lara, I'm not very good at writing, but here it goes:It took me until now that I could send it this way
I was diagnosed with ALS in January 2007. Until I heard about ALS in Wonderland, I had never received any financial help from any organization. When I discovered the ALS in Wonderland organization, I decided I would try to get in touch with them. I thought I might possibly receive a phone call back. I never believed that I would get more than a phone call, if I even got that. But, within a couple of weeks, I received my first check from them. Then, a month or so later, I received another check. This is a huge relief for someone like me who has to pay out-of-pocket expense for health care needs which require 24 hour care. This organization is needed very badly for people like me or anyone in this situation. I just hope it continues to be able to help all of us.
ALSIW and Lara McGee have helped my family in a way no one else could. The foundation generously donated money to my family so we could hire respite care for my father. My 79 year old mother was caring for my dad who was 81 years old. This grant allowed her a much needed break. The emotional support is overwhelming. Lara is living this ALS experience with her family, and understands exactly our challenges. Lara also advises us on medical equipment that will help my father. She has personally met him so she recognizes his stage of ALS and what will make his quality of life better. I have reached out to 3 or 4 ALS organizations and ALSIW is the only one that has actually helped me.
Sincerely, Jenifer Kirkland
When my dad was first diagnosed when ALS, I turned to the internet for more information (like I always do.) What I found scared me to death -- most of the information available was terrifying statistics about survival and impossible to understand medical information. I wanted so much to help, but I had no idea how. I also needed support, but wasn't sure who or how to ask.Getting involved with ALS in Wonderland has changed all of that. I'm no longer scared because I see other ALS patients living full lives no matter where they are in their progression. I've met people in the same situation as I am, who have more experience and are willing and happy to lend me a shoulder and an ear. I've found an opportunity to put my creativity and skills to use to fundraise and support not only my parents, but other pALS that I know. I've found wonderful people to share this journey with. I've gone from feeling helpless and hopeless, to knowing that I'm making a difference and having a wonderful time doing so. I am so grateful for not only the opportunities that ALS in Wonderland has provided me, but also the support and love that they have for my parents. It's truly an amazing organization and I am proud to be a part of it.
ALS IN WONDERLAND has been a Godsend to my wife and I. They have helped us in so many ways, such as monetary, physical needs, and mentally. All we have to do is make a call and they will help in any way they can. They are supportive and understanding. Lara is always looking for ways to help us.
ALS In Wonderland has helped my family in many ways. Visiting my mom so she could see a new face or two, bringing her favorite foods and desserts. letting her know she's not alone, making her feel loved. sitting and talking to her and making her laugh and put a smile on her face and was very knowledgeable of the resources to things my mom needed in her condition concerning ALS.
ALS In Wonderland has been a Godsend. They have taken me to my clinics and are available anytime one of us needs transportation and advocacy. They also give monetary assistance on their own initiative and immediate financial help when requested. They have made my life with ALS in Arkansas much brighter.
ALS In Wonderland has been a wonderful organization for my family and I. My husband passed away on September 20, 2014 from ALS and Lara overheard my daughter having a conversation on the phone right before he passed. She heard my daughter telling a friend how my husband was concerned about financials for the family. Lara approached wanting to help, and we received a check in the mail 48 hours later. ALS In Wonderland sent another check shortly after which tremendously helped with the minor details needing to get done for his arrangements. I was so taken back by the generosity of this foundation to have so much empathy and drive to want to help a complete stranger during our most difficult time. Since then, the foundation has included me on other activities for other ALS patients which has been great medicine for me to be involved and relate to others going through a similar situation. I am very grateful for ALS In Wonderland.
My name is Judy Glover, surviving spouse/caregiver who took care of my husband for 4 years after being diagnosed and suffered with the devastating effects of ALS. After this experience I say it is of the utmost importance for any family going through this at present time to receive any and all help possible to care for their loved one. This disease is relentless and can either be slow progressing or rapid but the end results is the same...death. If it hadn't been for the ALS in Wonderland Foundation helping us our utilities would have been turned off while we was in the hospital just one out of many times during this illness. They also provided help to pay for my meals while we were there. There are so many needs insurances won't cover until a certain event has taken place such as an ALS patient needing a good hospital bed with an alternating low air loss mattress system which medicaid will not provide until the patient has developed a bed sore. AlS patients lose the ability to use their upper body strength quite early and need this type bed, a bed that is not so rickety as the DME companies provide for medicare which fell apart with my husband in it. I had to fight to get a bed for my husband. This is all wrong. The care becomes so intense with ALS, such as life support, the family needs 24 hour in home help. We need more paid , trained caregivers to help the families. Through government fundings or grants the families can have more help earlier in the illness since you are placed on waiting list and must meet certain criteria before any help at all is received from the government. AlS patients who are on life support can not go to nursing homes so the care takes place at home or in the hospital wearing out the family/caregivers because of the lack thereof. ALS had been on the back burner for finding a cure and there was so little awareness because it is on the rare disease list until the ice bucket challenge came along. AlS is more prevalent than society knows. IT IS NO LONGER RARE TO MY FAMILY OR TO MY FRIENDS LIVING 5 MILES DOWN THE ROAD WHO ARE ALSO DEALING WITH THE MONSTER. Families are crying for help in the homes and it takes money. My income was reduce over $11000.00 last year because of work missed while taking care of my husband. There was nothing to pay bills with. PLEASE HELP families who are also going through this same devastating time in their lives. The families need relief of financial hardship and through providing grant monies to the families there will be one less thing for them to worry about while trying to help their loved one.
Having less is very challenging and the hardest for me is financially not being able to provide for my family. ALS in Wonderland has helped made by sending me checks monthly to help with expenses. Also they help me emotionally by being there to talk to and show me other resources. ALS In Wonderland helped me file applications to get my service dog; without them I never would have gotten my service dog Dyson. My service dog has changed my life completely. Being involved with ALS in Wonderland I have met many wonderful people and I'm so thankful that all them are in my life.
Als In wonderland has helped me and my family so much and we are very grateful for all their help and support.
Renwick Brown & Denise Watts
Thank you so much for the gift! My wife and I also wanted to tell you how much we appreciated the visit to our home during the holiday! It really brightened my wife’s days just knowing that there is an organization like yours, and you and your family out there doing good for others.
Martin Maynard & Patricia Maynard
We received your generous gift in the mail after literally getting home from the emergency room where we had to pay a $200 co-pay (Scott’s doing fine, his feeding tube had come out and it had to be replaced immediately). Thank you very much for your generosity, we truly appreciate it. If you’re ever out this way, please stop by and say hello.
Scott and Denise Patterson
Just wanted to let you know that Cindy Passed away in her sleep Yesterday (30th). She was 56 years old. She will be cremated and no funeral services will be held per her wishes. She had wasted down to practically nothing and she knew what even more terrible existence lay ahead with no remaining quality of life, so she lost her will to live and her passing was for the best even though we wanted more time of course. Cindy was a vibrant, loving and beautiful Spirit and will be missed. Sorry you didn’t get to meet her but she saw your great photos on your website and knew of your kindness and work helping ALS patients.As for me, I am physically, mentally and emotionally exhausted as well as deeply saddened, but doing ok and going to be alright. I will cry, laugh, shout and throw a few things around as I reflect on our lives together and then go on with my life. It is not necessary to send anything nor do I need anything. Just your thoughts and prayers.Thanks again for the gift, it went to help pay some medical bills and a few personal things for Cindy. I have enclosed a couple of photos for fun, so you can see her before ALS
I was amazed at how quickly ALS in Wonderland responded when I first emailed them for help. I applied on a Saturday, was not expecting to hear from them until Monday, but received a call back within a couple of hours, and on Monday, a check to help offset expenses. These funds have extremely helpful as my husband is retired and I am not able to continue working because of ALS. We had to buy a wheelchair accessible van last summer and ALSIW's funds have really helped with that cost. Another wonderfully generous act that ALSIW did was to sponsor a fundraiser to help me get a portable wheelchair accessible shower. Assisting with this was a tremendous help to my family. Lara and ALSIW have been such a blessing to me and my family since being diagnosed.
We just wanted to say thank you for your both as a friend and monetarily. We cannot tell you what a difference it makes. I call our situation the "in-betweens". Since we are both retired the only income we have is social security, which comes to a little over $100 a year too much to qualify for any help at all. We have tried applying for Extra Help, Medicaid, food stamps, etc. but each time are told we make too much money. The help you send us makes a difference in literally buying one or two apples or even being able to buy hamburger meat some weeks. I am not saying this to sound like a "poor pitiful us" statement it's just the way it is. When we receive help from your organization it is always at such the right time. It allows me to get Jackie out of the house and just ride around town for 30 minutes or go get a coke at Sonic. Last month his request was: can I just have a store bought hair cut?. We did thanks to your Christmas visit. It is very hard on someone with ALS to stay home day after day and so frustrating when you can't do the littlest things that you used to.
Thank you for your organization and God Bless you all.
Thanks Lara for all that you do for us. The monthly checks are a blessing. Thanks for being there when we have questions. You are appreciated.
Jackie and Jacquie Norsworthy