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.
The LiveLikeLou Foundation is focused on giving children of ALS families life-enhancing experiences and financial assistance to pursue their higher education dreams.
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.
The Adopt & Serve an ALS Family program matches ALS families with teams of volunteers from the Phi Delta Theta Fraternity who attend college or live nearby for a long-term support relationship inside or outside of the home. The program is designed to introduce our volunteers to the journey of ALS families and to make them more compassionate and connected to the cause of ALS.
Indoor organization projects, small household repairs, yardwork, basement or garage clean-up, occasional light errands, and relationship building with ALS patients and their family members are all examples of the types of services offered. Services do not include medical equipment or supply-handling, transportation, or financial support.
This program makes the disease of ALS more personal to our volunteers and teaches them value of service in their communities over time. Each volunteer relationship is unique and developed between the ALS family and the Phi Delt volunteers.
Are you an ALS family looking for long-term indoor or outdoor volunteer support? Complete our application.
Are you a Phi Delt chapter or alumni club that wants to support an ALS family? Complete our application.
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 for children of ALS families across the country. 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...
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.
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.
The LiveLikeLou Foundation underwrote the inaugural, invitation-only, and closed-door symposium was hosted at The University of Pittsburgh’s Brain Institute in Fall 2018. More than 60 emerging scientists in the field from 17 different institutions convened for two days and addressed the ‘Physiological Relevance of Current ALS Models’ to determine how relevant current ALS models are to patient populations. This is of great importance since scientists develop drugs based on these models. Also, small group discussions at the event focused on: a) Autophagy and proteinopathy b) Neuroinflammation c) RNA metabolism d) New pathways.
Grants for future forums sponsored by LiveLikeLou Foundation are under consideration.
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:
Suzanne Alexander - Director, The LiveLikeLou Foundation
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
Daniela Zarnescu, PhD - Professor of Molecular and Cellular Biology and Principal Investigator of the Zarnescu Lab, University of Arizona, Tucson