The Jim Heller 'End ALS' Memorial Fund

Sept. 6, 2018 was the worst day of our lives, until it wasn't. That's the day our world turned upside down when we received Jim's ALS diagnosis. Now our worst day is May 16, 2020, the day the world lost a wonderful man.

As Jim's caregiver, I saw every nasty piece of this disease up close and personal. Jim and I talked often about the need for broader awareness, more treatments and a cure for ALS in my lifetime.  Not only is an ALS diagnosis a death sentence, but there are only two FDA approved drugs that an ALS patient can even try ... both of which have only proven to add 3-4 months to your life. That is not acceptable, and I vowed to Jim to do what I could to help others in our position. Imagine being an avid skier, a skilled woodworker, a businessman and more, and then having this disease take your entire body away from you one piece at a time. ALS causes the brain to stop sending signals to your muscles until they eventually die, leaving a patient unable to move, eat, and eventually breathe. Jim lived in fear every day wondering what limb would stop working next.  And yet he never complained.  Never. 

We are honored to start a Fund in Jim's name that will allow me to work with the best ALS organizations out there to further advance treatments, trials, legislation, research, and patient-required equipment. We have formed The Jim Heller 'End ALS' Memorial Fund, and the kids and I are kicking it off with a $75,000 donation.  In lieu of flowers or other items, we would ask that any memorials be made to this Fund. While we assume most will use this online giving option, the Fund will also be able to accept checks, stocks, real estate, etc., which can also help some of you with your tax or estate planning. I can promise you, as I promised Jim, that we won't just be donating funds but instead that I will be active in making sure our money is put to the best use possible to help end this disease.*  I plan on partnering with great organizations who are already at work on ALS awareness, research, trials and most importantly, a cure for this horrible disease. All donors will receive a receipt, as 100% of your gift will be tax-deductible. I also will be keeping all donors updated on our progress and use of the funds on a regular basis. Thank you so much in advance for considering our cause.

ALS is not an incurable disease ... it's an underfunded one.  Keep your fork.

*Disclaimer: Your irrevocable gift will be applied to a donor advised fund at the Saint Paul & Minnesota Foundation. The advisor for the donor advised fund can recommend grants to any qualified charitable organization.