Our Impact
Grant Application
axeALS Foundation’s purpose is to help ALS patients and their families live as full and normal lives as possible and to encourage research for the prevention, alleviation, care, treatment, and cure of ALS. We achieve this goal in part by giving grants to individuals who are burdened by the cost of living with ALS and through giving grants to institutions to further our mission.
The Grant Application window is currently closed. Check back here to learn when the next open application window will be. Thank you!
Application Procedures and Guidelines
- There will be one grant application window each prior to each golf tournament.
- The application must include a personal statement, including sharing financial obstacles and an explanation of income/expenses.
- Grants are awarded to those who demonstrate significant financial need. Please do not share specific bank account or other confidential details.
- Follow-up interviews and financial documentation may be required.
- Applicants must be an ALS patient and a US citizen. Patients may have a guardian apply on their behalf.
- Applicants may apply every grant cycle unless previously received funding from axeALS Foundation. If you have previously received funding, you are not eligible to apply.
*The granting timeline for institutions is upon invitation only and requirements may vary.
All questions should be addressed to info@axeals.org.
axeALS Foundation accepts applications from individuals regardless of race, religion, gender, ethnicity, marital status, or sexual orientation.
Past Grantees
Johnny Rodriguez's Story
Three months after diagnosis, I struggled with basic tasks like lifting a water bottle or using utensils. My right pointer finger was almost completely limp. Determined to fight, I assembled a dedicated team of integrative doctors and specialists. With their support and my family’s encouragement, I made significant progress. I regained the use of my pointer finger, improved my handwriting, and strengthened my arms without any strength training.
Challenges remain, but I stay focused on communicating my progress and setbacks to my team, maintaining a ‘positive neutral’ mindset. I don’t dwell on the outcome; I focus on enjoying life with my family and friends. This approach helps me stay motivated and engaged in my fight against ALS.
Johnny Rodriguez's Story
Three months after diagnosis, I struggled with basic tasks like lifting a water bottle or using utensils. My right pointer finger was almost completely limp. Determined to fight, I assembled a dedicated team of integrative doctors and specialists. With their support and my family’s encouragement, I made significant progress. I regained the use of my pointer finger, improved my handwriting, and strengthened my arms without any strength training.
Challenges remain, but I stay focused on communicating my progress and setbacks to my team, maintaining a ‘positive neutral’ mindset. I don’t dwell on the outcome; I focus on enjoying life with my family and friends. This approach helps me stay motivated and engaged in my fight against ALS.
Mario Di Bella's Story
The axeALS Foundation presented a check to Mario Di Bella and his family at the Athletes First Invitational benefiting the axeALS Foundation on June 12, 2023.
In December of 2021, Mario di Bella was diagnosed with ALS at age 35. He went from Olympic Weight Lifting, skateboarding & going to school full time for his Masters Degree to needing help getting out of bed, using a wheelchair full time and worst of all, completely losing his ability to speak. As his wife Jessica would say, “Anyone who knows Mario, knows the big & impactful presence he brings to anyone who meets him- from his love, humor, laugh, hard work ethic, passion & desire to help others.”
Justin Upchurch's Story
Justin Upchurch was a grantee recipient at the axeALS Foundation golf tournament in Atlanta, Georgia on September 27, 2022.
“My symptoms began with twitching in my biceps in May of 2019. On December 3, 2020, at the age of 39, I was diagnosed with ALS. Shortly after my diagnosis, I decided that while this disease may one day take away my life on this Earth, it will not dictate how and why I live. I’m determined to live life on my terms not just for me, but for my wife and kids, and in honor of those who have fought, and those who continue to live with and fight, against ALS. I’d be lying if I said I don’t have bad days or dark moments because I do, but even in those moments I hold on to hope.
I’m able to remain hopeful because of my faith, my amazing support system, and organizations like the axeALS Foundation. Because of the generous grant we received from the Foundation, we were able to obtain an accessible van that helps me to continue living my life outside of the house. We are beyond thankful for the axeALS Foundation and all the support they give and work they do for the ALS community.”
Justin Upchurch's Story
Justin Upchurch was a grantee recipient at the axeALS Foundation golf tournament in Atlanta, Georgia on September 27, 2022.
“My symptoms began with twitching in my biceps in May of 2019. On December 3, 2020, at the age of 39, I was diagnosed with ALS. Shortly after my diagnosis, I decided that while this disease may one day take away my life on this Earth, it will not dictate how and why I live. I’m determined to live life on my terms not just for me, but for my wife and kids, and in honor of those who have fought, and those who continue to live with and fight, against ALS. I’d be lying if I said I don’t have bad days or dark moments because I do, but even in those moments I hold on to hope.
I’m able to remain hopeful because of my faith, my amazing support system, and organizations like the axeALS Foundation. Because of the generous grant we received from the Foundation, we were able to obtain an accessible van that helps me to continue living my life outside of the house. We are beyond thankful for the axeALS Foundation and all the support they give and work they do for the ALS community.”
Mark Griffin's Story
Mark Griffin was another grantee recipient at the axeALS Foundation golf tournament in Atlanta, Georgia on September 27, 2022.
Mark was diagnosed with ALS on February 14, 2022 at the age of 42. Mark was able to use the funds to remodel his bathroom to make it more accessible for his needs.
Eap Program
The axeALS Foundation has joined forces with the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital to establish a groundbreaking Expanded Access Protocol (EAP) program at the University of California, Irvine (UCI). This initiative, made possible by the generous support from the axeALS Foundation, will provide individuals living with ALS, who do not meet the criteria for clinical trials, with an opportunity to access investigational ALS drugs.
Dr. Namita Goyal, a respected figure in neurology as the director of UCI Health ALS Services and a professor at UCI School of Medicine, will oversee the implementation of the EAP program at UC Irvine. Expressing enthusiasm for this development, Dr. Goyal stated, “We are so excited to bring this EAP program to our ALS patients at UC Irvine who do not qualify for trials and are so thankful to axeALS for providing our patients a wonderful opportunity to access ALS drugs under investigation.”
A significant challenge faced by individuals with ALS is the limited eligibility for participation in clinical trials due to the specific characteristics or progression of their disease. Expanded Access, also known as Compassionate Use, offers a pathway for patients with serious and life-threatening conditions to gain access to investigational treatments not yet approved by the FDA. The EAP program aims to expand research opportunities for patients by facilitating access to experimental drugs and collecting crucial safety and biomarker data from a population that is not typically studied in randomized trials. This data can inform future trials and potentially support market approval for ALS patients beyond those typically included in double-blind clinical trials.
“We are thrilled to launch the next EAP center at UCI and are grateful to Axe ALS for this award,” expressed Dr. Merit Cudkowicz, Director of the Healey & AMG Center for ALS and Chair of the Department of Neurology at Mass General. Dr. Cudkowicz further added, “The EAP program has opened doors for patients, research, and innovation in ALS care, and we look forward to furthering this success at UCI.” The establishment of a new EAP center at the Jefferson Weinberg ALS Center, as part of the TECHvsALS initiative, highlights the increasing support from industry and foundations to broaden access to investigational therapies for ALS patients.
Since its inception in 2018, the Healey & AMG EAP program has expanded its reach through a nationwide network of clinical researchers, providing access to more individuals living with ALS. With a commitment of $486,000 from the axeALS Foundation, UCI’s EAP program is set to enroll up to 30 participants over three years. The program is expected to start accepting participants in the spring and early summer of 2023.
