My name is David Neufeglise. I am a 42-year-old husband and father of three daughters, and I have ALS. It’s a brutal diagnosis to get and even tougher to live with. I don’t waste my time being angry, bitter, fearful, or worried though as those are emotions that accomplish nothing. Instead, I focus on actions. Thanks to the generosity of hundreds of donors, I was able to get the most advanced regulatory-approved ALS treatment in the world. It’s a stem cell treatment called Neuronata-R by Corestem and is only available in Seoul, South Korea. The stem cells are derived from each patient's own bone marrow and do not involve embryonic stem cells in any way.
This is a very expensive treatment requiring three separate hospital stays. The minimum cost for the treatment and hospital stays was originally estimated at $90,000-$100,000, but due to the favorable exchange rate and lack of complications during my treatment, the cost was around $71,000. Travel and trip expenses for myself and someone to assist me for three trips to Seoul added about $15,000 to that amount. My first payment was due at the time of my first bone marrow extraction on November 23, 2018.
I used the first $71,000 of these donations strictly for payments to the Hanyang University Hospital (where the treatment is provided) only, not on airfare, hotels, or meals, so that donors know that every dollar they gave went directly to fighting my ALS. Additional donations are greatly appreciated and will be put towards seizing other promising treatment opportunities as they arise.
Total Donations as 2/10/2019: $145,222
Treatment Payment #1, made on 11/13/18: $35,274
Treatment Payment #2, made on 12/10/18: $35,688
A friend is helping to manage our family’s fundraising efforts through GoFundMe.com.
We investigated tax-deductible options but found that none could be used with this treatment, as it is not FDA-approved in the United States.
We will keep this site updated with our fundraising efforts and my progress. Thank you for joining us on this journey.