ALS

Enough. Enough pain. Enough loss.

Enough of a terminal diagnosis with no cure.

My journey with ALS, also known as Lou Gehrig’s Disease, started on September 6, 2018, the day my husband, Jim, received this dreaded diagnosis. The appointment comes complete with an “I’m sorry, there is no cure”, a “go home and get your affairs in order”, and a “there is no way to know how much time you have, but the average is two to five years.” Wow. First you go into shock, then you go into anticipatory grief, and then you fight for your life. I left my career the day my husband was diagnosed, with hopes that we would have some good days ahead. We didn’t get as many as we had hoped, as he left this world about 20 months later on May 16, 2020. As his sole caregiver in the meantime, I stayed very busy simply trying to stay ahead of the disease and learn what would be coming our way next. It wasn’t until after I lost Jim that I started to get involved and include my voice in the grassroots efforts that had already begun. I planned to return to my 35-year career, but instead I found myself pouring all my passion into ALS work. No one was more surprised than me.

The thing I hated the most had become my purpose.

Now I raise funds to support drug discovery, volunteer alongside others to fight for much-needed national legislation and appropriations, meet with as many people as possible to become a thought leader in this arena, write articles, and speak to interested parties. My goal is to make sure that a cure is found in my lifetime so that there soon can be an end to the path our family walked. My speaking includes grief groups, podcasts and other organizations looking both for knowledge and for words of inspiration. Although I lost my soulmate, I have now seen life through a different lens, and I am blessed. I have learned how much power is in our thoughts, and we have only this one, precious life to put those to work.

Meeting in Washington, DC with Senator Lisa Murkowski (R) Alaska on ALS Legislation

So, enough of being stuck in your grief. Enough of having no purpose. Enough of believing that the Universe is out to get you. Just plain enough.

Read the Jim Heller 'End ALS' Memorial Fund Newsletters

 Make a Difference

Articles

  • ALS: How Losing My Husband Led Me to Finding a New Purpose

    Read the blog

  • Commercial Real Estate Pro Lori Larson Heller’s New Calling Is Fighting A Deadly Disease

    Read the article

Lori Larson Heller wins the Fran Delany Challenge and Respect Award

 
 

Presentation of the 2022 Fran Delaney Challenge & Respect Award and Lori Larson Heller’s acceptance speech.

 

ALS Therapy Development Institute (ALS TDI) 2022 Fran Delaney Challenge & Respect Award

Lori with the other winners of the award. Rebecca Mourey, Lori Larson Heller, Sandra Marlowe, and Her ALS Story.

 

Room Dedication

Plaque honoring the dedication of a laboratory room to the memory of Jim Heller at ALS Therapy Development Institute (ALS TDI)

Pictured left to right: Carol Hamilton, Vice President of Development @ ALS TDI; Lori Larson Heller; Fernando Vieira, MD, Chief Executive Officer and Chief Scientific Officer @ ALS TDI

 November 5, 2021 ... In recognition of the funds provided for research and drug discovery to ALS Therapy Development Institute (ALS TDI) from The Jim Heller 'End ALS' Memorial Fund, the Watertown, MA-based firm today dedicated a room in its laboratory in honor of Jim Heller. The room houses the mice being studied for signs that the potential drug or drugs being investigated show promising results, at which point an Investigational New Drug (IND) application can be submitted to the FDA for approval and, hopefully, movement into human clinical trials.

 

A Look at Our Journey…

 
 

Lori's Advisory Roles

 I continue to look for new ways to help in the fight against ALS, beyond just financial support. The research organizations, clinical trials and pharmaceutical companies have come a long way in recognizing that the patient’s (or caregivers’s or advocate’s) voice is important in working together to solve the puzzle that is ALS. In that regard, I have been asked and agreed to participate in several endeavors:

  • Biogen Pharmaceuticals Patient Advisory Committee

  • Clene Pharmaceuticals Patient Advisory Committee

  • Northeast ALS Consortium (NEALS) Patient Advisory Committee

  • HEALEY ALS Platform Trial @ Mass General Patient Advisory Committee

  • Northeast ALS Consortium (NEALS) Research Ambassador

  • U.S. Government-Department of Defense, Consumer Reviewer of Congressionally Directed Medical Research Programs (CDMRP) for ALS Grants https://cdmrp.health.mil/pubs/press/2023/23cdmrp_alsrp_press_release_morris_principles

  • ALS Natural History Study Patient Advisory Board

  • HEALEY ALS Platform Trial @ Mass General Regimen F Steering Committee

I remain committed to contributing whatever advice, knowledge, wisdom or brainstorming ideas I may have that can help us all end ALS.