Diane's ALS Medical Fund
Diane Mummaw’s family and friends are uniting to help raise money for her medical expenses associated with her battle against ALS. Diane has a special place in all of our hearts and everyone that knows her loves her amazing spirit.
In November 2015, Diane was diagnosed with ALS “Amyotrophic Lateral Sclerosis” also known as (Lou Gehrig's Disease). ALS is a terminal neuromuscular disease with no known cure. It affects voluntary muscles, eventually leading to muscle weakening, wasting, twitching, and an inability to move the arms, legs, and other areas of the body, including speech and breathing ability. While Diane still has her strength, symptoms will worsen, specifically affecting her ability to use her hands. Eventually, the disease will spread to her legs, and ultimately, her breathing.
Financially, the ALS Association cites that, on average, annual medical expenses can be projected at approximately $75,000 per year, per patient; much of which must be paid “out of pocket” or is not covered by basic insurance plans. These costs will significantly increase in later stages of ALS. In all likelihood, most of us would never budget for situations (and extreme expenses) like this that may happen.
Monies raised for Diane will go directly to her to help cover medical expenses and the needs of the Mummaw family. We hope by relieving some of the financial burden, this fund will make it easier for the Mummaw family to deal with the challenges they face. Your support, in any form, is incredibly appreciated and helpful.
If you have any questions or would like to send something directly to Diane, please email us via the Contact button below. Or, you may call Melissa Harrison or Kara Benson.
Thank you in advance for your generosity, love, support and prayers!
April 2018: Where does the time go? It has been 15 months since I left Free State. I am now 2 ½ years since my diagnosis of ALS. Considering the life expectancy with ALS is 2-5 years from diagnosis – I would say I am doing VERY well!! My connection to the ALS Association has allowed me to meet many wonderful people, both ones with the same diagnosis and others who are their caregivers and supportive family & friends. I have met beautiful souls diagnosed after me and already gone from the earth. This disease has no path, no consistency, no timeline or comparison that gives any comfort. It affects everyone differently. I am one of the blessed people. My progression has been slow. I truly believe that has happened due to the AMAZING love and support I have from all of you. I am one of the lucky people! Does it seem strange for someone to say that when they have a terminal disease? It feels like perfect truth to me.
When you see me, many say that I look the same and I hope that’s true. My challenges are changing, though. My arm and hand strength has weakened severely and can be affected by fatigue. Morning coffee is sometimes a shaky experience and a crap shoot if the cup will make it to my mouth. Honestly, I battle fatigue in a way that I never understood before. My brain has always told me that you get tired from doing too much. Then you rest and recover and feel better. It isn’t like that for me any longer. I fatigue from sitting without good support or cushions to prop my arms. I fatigue from car rides, changes to my routine and running an errand. I fatigue from getting dressed or waiting too long between meals. A nap no longer provides recovery, just rest. I am lucky though! So far my legs are still strong. I am still walking. I have realized why many ALS patients get their power wheel chairs before they lose the ability to walk. Those chairs provide support and help resist fatigue. So don’t worry if you see me in one before too long – I probably can still get up and down myself – but the chair will allow me more time to socialize without fatigue.
Changes are coming to my family, as well. Samantha will be graduating from high school in May. She has attended the same school since pre-K, so when she leaves in August to attend the University of North Florida, it will be a major life change. I know without a doubt that she will do wonderful things in her life – she’s amazing! Fortunately, since UNF is in Jacksonville, we expect to see her on weekends. Since I can no longer live alone, Mikey & Britny will be moving in to help me. We are putting an addition on to the back of the house to allow them some space and comfort. (Prayers through the construction project needed!!). I am so blessed by their willingness to move in with me and am so grateful they will be here.
I want to share with you and be very transparent about the generously donated funds and ongoing fundraisers and the difference you have all made in my life. GoFundMe takes a percentage of the $40K (AMAZING) that has been donated. After that I had medical out-of-pocket expenses that ran up to just over $25K and another $4,000 in premiums paid during the waiting period to get on Medicare. Since transitioning to Medicare, I have paid about $6,000 in premiums. My monthly medical expenses (Medicare, supplement, Rx, medical devices not covered, etc.) run between $700-$1000 per month. As we move forward, we need to purchase an accessible van to transport my scooter and eventually my power wheel chair. Prices run up to $70 grand on these (Yikes). Fortunately Medicare will cover almost all of the cost of the power wheel chair (which can run upwards of $30,000)! I thought the ALS Association graphic of ALS Facts was wrong when it said that an average family’s cost to manage the disease was $250,000 but I am finding that these numbers are probably an accurate average. This is just the reality. Your help has allowed me to focus on myself, not the stress of these costs. I am forever grateful for all of you!
I am also so grateful to Debra Belanger and a team of folks helping her to put on a Golf Tournament Fundraiser for me on Thursday, May 3rd in Oviedo! What a great day that will be! I hope to see you there and I will bring my scooter so I can resist the fatigue and enjoy the day with you! Even if you don’t golf, you can come out for lunch and the Silent Auction!
Remember: anytime you are passing Deltona and have a few minutes – call me & come on by for a visit! Love to you all! J Diane
June 7, 2017 - Hi Everyone! I thought it was a good time for an update as I just went to my 3rd ALS Clinic appointment at Mayo in Jacksonville last week. The great news is that I continue to progress slowly with very little decline in muscle weakness since my last appointment in December. The fatigue continues to be my biggest struggle and “conserving energy” is my focus. I’m glad that my struggles aren’t overly apparent when you see me, but I definitely have them! Living with this disease requires a tremendous amount of patience – of which I find I have been lacking in life! OH the lessons I’m learning! Ha!
You may have heard about a new drug for ALS that was recently introduced. It isn’t a cure but it has reduced the progression by as much as 30% in some patients. Unfortunately, it has only been tested in Japan on 90 people in total and the costs will be $146,000 per year! It is administered by IV through a port and not available until August. I would need to receive it 14 days in a row at first and eventually 10 days every month - forever. Medicare doesn’t allow for it to be given at home unless you are bedridden so I would need to go to an infusion center each time. My doctor feels that since my progression is slow, I may want to wait to try it as there are side effects and the quality of life during treatments can be affected. For now, I am not making any firm decisions one way or another.
This disease also requires a lot of attention to “managing” being sick. There are endless forms, medical reports, reading materials, evaluations of products, absorbing the “what ifs” and trying to be prepared for the next steps. It’s a lot but I’m keeping up with it pretty well, I think! Having undergone a renovation to my home last fall and making it ADA compliant gives me an ease to my life and will allow me to take the next steps easier.
My kids and I attended the ALS Advocacy Conference in Washington, DC last month. We were there to meet with legislators regarding the needs of the ALS community. I feel very blessed that I could go again this year! Although I needed the assistance of a wheelchair for the excessive walking I’m grateful that my legs haven’t been affected as yet and I still can participate. I think we made some real progress with getting attention to some bills that directly affect the challenges ALS patients face.
I wanted to once again express my sincere gratitude to everyone – particularly all of you who have donated here on this site and at the many fundraisers held for me. THANK YOU from the bottom of my heart! I wanted to tell you all that I have used these funds for medical expenses only and have a large amount held for when I have to get more home care. Home care is very expensive and Medicare doesn’t pay for Long term care (non medical personal assistance). During the process of the diagnosis and subsequently living with this disease, I have been faced with 4 out of pocket requirements that totaled almost $18,000. I retired from working in January as the fatigue didn’t allow me to adequately handle my position. This put me on Short Term Disability with a benefit of only $450 a week (I survived on less in my life but it’s been a LONG time!). I have applied for Social Security Disability and Medicare but there is a 5 month waiting period. I am in the middle of that Waiting period now. This is one of the things we are fighting for – to have this waiting period waived for ALS patients. During the waiting period, I have had to maintain my personal health insurance plan at $800/month. I have also used the funds to pay those premiums. I wanted you all to know that your donations have given me a sense of security for some of these high costs and it has taken away some of the stress involved. I am so grateful!
I have been very fortunate to travel and spend quality time with family and friends. Many of you have provided these opportunities for me and I am VERY grateful. None of these experiences could ever be replaced. I may not know how long I will continue to progress slowly or how many more FUN trips I can take – but know this – I will face each challenge with as much grace as I can muster and I will appreciate each opportunity with a heart full of love. Thank you so much! Diane
August 2016 – Hi Eveyone! I wanted to provide an update on my health. I am still feeling pretty well. My main issue is fatigue and continuing decline in my arm and hand strength. I went for my 1st visit to the Mayo ALS Multidisciplinary Clinic in Jacksonville last week. This has become the best way to treat an ALS patient as each visit allows you to be seen by individual specialists like: physical, occupational, speech, respiratory, dietician, therapist and neurologist. It was an amazing amount of information! It also created a baseline going forward. While there really isn’t any treatment for me at this point, they can assist me with alternative ways to manage my fatigue and weakening muscles.
That being said, I am moving forward with home modifications including a zero entry shower, bathroom expansion, widening of doorways inside and out, new flooring throughout, etc. I’m eager to accomplish this while I still feel good. Also, I have set a timeline to stop working in the new year and go on Disability. I am blessed that my company has been extremely supportive of me and the challenges I face. I work from home 3x a week now, which makes a huge difference! Free State is having a “Legacy” party for me in January on the 19th. If you want to be included on the invitation list, please contact my office at 407-262-0544. It will be a BLAST!
Thank you all for the continued Love & Support I have received! Truly, I am blessed! Diane
This is wonderful news and I know that your prayers and support have been lifting me up! While he cannot predict when or how the decline will increase, the doctor doesn’t feel it’s necessary for me to enter a routine at the ALS clinic yet. He feels that while some of my existing muscle loss is challenging, we need to wait and see what comes next. I will not have to take meds or see him again for 6 months unless I experience some changes!!
I will continue to take care of myself and enjoy my life. I am truly blessed abundantly by the amazing people in my life and thank you all from the bottom of my heart!! Let’s celebrate LIFE!