How We Make an impact

The LiveLikeLou Foundation is focused on two major impact areas:

1) Supporting ALS patients and their families.

2) Supporting ALS research to find a treatment or a cure.

View a snapshot of how we are Leaving ALS Better Than We Found It.

Supporting ALS Patients And Their Families

The LiveLikeLou Foundation delivers unique volunteer support to ALS families through arms-and-legs volunteer support in the home, life-enhancing experiences for kids, and financial assistance to pursue their higher education dreams.

The Great LiveLIkeLou Outdoor Clean-up FOR ALS FAMILIES

The Great LiveLikeLou Outdoor Clean-Up initiative matches registerd ALS families with individual volunteers from the Phi Delta Theta Fraternity for occasional arms-and-legs outdoor support in a manner that protects everyone from unnecessary exposure to illness or other risks. Both undergraduate and alumni Phi Delta Theta volunteers are involved with the program.

Spring cleaning. Yardwork. Garage clean-out. Simple, one-time outdoor repairs and chores. These projects should be scaled to the limitations required by local, state, and federal guidelines for social distancing. Services do not include medical equipment or supply-handling, transportation, or financial support.
There is no fee or obligation from ALS families in exchange for this support, and families may cancel the arrangement at any time. When your ALS family registers, we will attempt to recruit a Phi Delta Theta volunteer who resides near your home. Once we match your family with a Phi Delt volunteer, you and the volunteer can take it from there! 
Are you an ALS family looking for occasional, outdoor volunteer support? Complete our application.

See our impact video

Hope Loves Company, Inc.

Children living with ALS in their home often face difficult stigma, caregiving, financial, and grief challenges every hour of every day. There is nothing easy about their journey. And, normal childhood activities like summer camp often are not affordable or accessible. 

The LiveLikeLou Foundation is honored to partner with Hope Loves Company Inc., which provides free-of-charge summer camp experiences, virtual interaction, coping skills and camaraderie for children of ALS Families ages 6 - 21 across North America. Our funds directly support the operations of the camps to ensure these kids can enjoy a relaxing, enriching and nurturing experience, especially designed for the unique complexities of ALS. In addition to our financial commitment, volunteers from Phi Delta Theta are committed to work at the camps to help the kids fish, play music, throw a ball, roast marshmallows...

Learn more about Hope Loves Company

Iron Horse Scholarships 

Research indicates that the average annual cost of living with ALS in the home is an extra $250,000 each year, to cover expenses like caregiving, special equipment, home modifications, communication devices, and life support measures. The economic impact to a family facing this disease can be devastating and span generations. Paying for a child’s college expenses is often impossible. 

The Iron Horse Scholarship pays up to $2,130 per semester for up to four years for an ALS patient’s dependent to attend a qualified post-secondary educational institution. The number 2,130 harkens back to Lou Gehrig’s record of consecutive games played with the New York Yankees. 

If you are the dependent of an ALS patient within five years of his or her life, you may qualify for the Iron Horse Scholarship. Although we are working hard to raise the funds for these awards, our waiting list for Iron Horse Scholarships is currently more than two years. You may send an email to [email protected] to be placed on the waiting list. Meanwhile, please consider looking into scholarships for this type of need from your local faith community, community foundations, and ALS Association chapter - sometimes regional organizations will offer scholarship support.

Supporting ALS Research for a Treatment or a Cure 

The LiveLikeLou Foundation is focused on developing partnerships to facilitate learning amongst ALS scientists and to support innovative ALS research to find a treatment or a cure. 

LiveLikeLou Emerging ALS Research Learning Series and Biennial Forum

Working in partnership with the LiveLikeLou Scientific Research Committee, we select and partner with leading ALS scientists to nominate host institutions, presenters, and the invitation list for these important research learning events. Together we are providing opportunities for collaboration, research partnerships, unique instruction, and grant opportunities not otherwise available to emerging ALS investigators.   

Past LiveLikeLou Emerging ALS Investigators Series/Forum Awardees:

  • 2016 - University of Pittsburgh Brain Institute
  • 2018 - University of Pittsburgh Brain Institute
  • 2020 - The Barrow Institute Neurological Institute
  • 2021 - The Barrow Institute Neurological Institute

Grants for Emerging ALS Research

The LiveLikeLou Foundation develops grants focused on emerging ALS researchers across North America and institutions committed to novel and innovative pre-clinical ALS research. 

We develop our grants based upon the recommendations of a volunteer Scientific Research Committee comprised of experts in the field. 

Members of the committee include:

Sami Barmada, MD, PhD - Research Professor and Assistant Professor of Neurology; Principal Investigator or the Barmada Laboratory, University of Michigan, Ann Arbor

Gaylon Morris - Vice Chairman, LiveLikeLou Foundation and Chairman of Scientific Research Committee, Principal with MorSolutions with focus on Public Health, Public Policy, and Alliance Development

Tom Petzinger - EVP Business Development and Public Affairs, KNOPP BioSciences

Rita Sattler, MSc, Phd - Associate Professor of Neurobiology at The Barrow Neurological Institute and Principal Investigator of the Sattler Laboratory at Dignity Health of St. Joseph's Hospital

Daniela Zarnescu, PhD - Professor of Molecular and Cellular Biology and Principal Investigator of the Zarnescu Lab, University of Arizona, Tucson