Fundraising

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

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GoFundMe

A friend is helping to manage our family’s fundraising efforts through GoFundMe.com.


About GoFundMe:

  • The most popular and well-known fundraising site
  • Very low expenses (2.9% of each donation that is deducted from the donation, plus an OPTIONAL tip that goes to GoFundMe, not us, that is ADDED to each donation)
  • NOT an IRS-recognized charitable organization, and therefore NOT tax deductible for you (the donor).
  • The gift limit for 2018 is $15,000 per donor (a married couple can make two donations, one in each spouse’s name). Any donation at or below that amount will have no tax liability for the donor or receiver. 

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. 

PayPal Option

For those who wish to just donate directly to us and avoid using a website, you can PayPal Johnna at jrneuf@hotmail.com.

Pay with PayPal or a debit/credit card

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