Help Dave Neufeglise's Family: ALS Care Expenses

Hi, my name is Johnna Neufeglise. As most of you know, my husband Dave was diagnosed with ALS (Amyotrophic Lateral Sclerosis), a 100% fatal neurodegenerative disease, in January 2017. His symptoms started almost a year prior to that. Dave's disease progression has always been slow, and he has surpassed the average life expectancy of two to five years. He's been able to witness more milestones for our three daughters than we ever thought he would, and for that we are very grateful! The longer people live with this disease, however, the more financial burden families like ours face. I write to you today to humbly seek your support and generosity once again.

Our family of five has been living on Dave's Long-Term Disability Insurance and Social Security Disability Insurance, along with savings, for over four years. In that time, we've hired private caregivers and have slowly increased the number of hours per week that we have covered.

Dave cannot be safely left alone for more than a few minutes. He depends on others for everything. Having caregivers to help me gives me the respite I so desperately need. It allows me the freedom to make appointments for myself and the girls when needed, run errands, fix things around the house, manage the household, even shower without worrying about him—all things you take for granted until your flexibility to come and go as you please and do things when you want/need to is taken away. I'm at the point now that I have shifted my focus to trying to be fully present for our girls. After years of saying, "I'm sorry, I can't, no caregiver," it's time for me to be able to say, "okay!" before they're all grown and gone. ALS affects the whole family. My mental health is much better off when I have help, and Dave's is too. The caregivers take him for walks, on various outings, and they see family every week to play euchre.

I have also been working a little bit to try and bring in some income, but all I am able to do is some household help for a few local families. It's the only thing that has the flexibility I need, because caregivers do call off last minute and I am always "on call." Many ALS families like ours have to fundraise to be able to pay caregivers so that the spouse can work to pay the household expenses.

My reason for re-launching this GoFundMe is that we are just about out of our funds from last year's campaign. We are so grateful that we surpassed our goal and that funding lasted much longer than expected! Thank you! To have had this last year of care covered was a huge blessing. Since we pay out of pocket for Dave's care, without the GoFundMe, I'm not sure how we would pay for it. His insurance (Medicare) does not cover in-home care, respite care, or the supplements he takes to try to fight this disease.

Currently, we have four caregivers who together are here for a total of about 85 hours/week. The rate is $26.00/hour. For a six-month period, that's roughly $58,000. Our local ALS Association does provide quarterly reimbursement grants on a first come, first served basis, awarding up to $1,000 each quarter for supplies and equipment not covered by insurance, and up to $1,000 each quarter for caregiver respite. So we have been fortunate to receive help in that way, but it still leaves an enormous amount for us to cover. Dave's supplements and off-label medications are another cost that we incur and are not eligible for grant reimbursement. The ones I order on Amazon cost us about $1800 in those same six months. That doesn't include the supplements and meds we purchase elsewhere, two of which are the most expensive.

We are trying as hard as we can to not let the financial burden of ALS affect our girls, but as we are using up more and more of our savings, this is becoming increasingly difficult. This isn't fair to our kids. They've suffered enough watching their dad decline and living through the isolation of Covid; I don't want them to have to suffer in this way as well.

We are so very grateful—beyond words—for all of the support we've received over the years. I hate asking for more help, it's certainly not easy for me. People have asked me how they can help, and I am now saying this is how. Please consider donating to our campaign and know that every dollar is appreciated. Even if you are unable to donate, sharing with your friends, family, and networks would be a huge help. I have set the goal at $60,000 in hopes of covering a good portion of his care (this is adding on to the $33,272 we already raised and have used, so hoping to raise $26,728). My Venmo and PayPal info is below, in case you prefer to use one of those rather than donate here. All donations will go directly towards paying for Dave's care. Thank you for helping to ease our burden, for your compassion, and for being a part of our village.

With deepest gratitude, The Neufeglise Family

Venmo: @Johnna-Neufeglise (last four digits of cell: 8473)

PayPal: paypal.me/JohnnaNeufeglise