HOW WE FIGHT ALS
Grant Application
The axeALS Foundation is dedicated to helping ALS patients and their families live as full and normal lives as possible. Our mission is to support efforts focused on the prevention, care, treatment, and ultimate cure for ALS (amyotrophic lateral sclerosis). We work toward this goal by providing financial assistance to individuals living with ALS and awarding grants to institutions and researchers advancing ALS research and patient support.
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 partnered with the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital to launch a groundbreaking Expanded Access Protocol (EAP) program at the University of California, Irvine (UCI). Funded by the axeALS Foundation, this initiative offers individuals living with ALS, who do not qualify for traditional ALS clinical trials, the opportunity to access investigational ALS treatments.
Dr. Namita Goyal, director of UCI Health ALS Services and professor at UCI School of Medicine, will lead the implementation of the EAP program. “We are thrilled to offer this EAP program to ALS patients at UC Irvine who are ineligible for clinical trials,” said Dr. Goyal. “We are so thankful to axeALS for providing our patients with access to promising ALS drugs currently under investigation.”
Many people with amyotrophic lateral sclerosis (ALS) are excluded from clinical trials due to the stage or specifics of their condition. Expanded Access, also known as Compassionate Use, gives patients with life-threatening diseases the ability to try experimental therapies that have not yet received FDA approval. This EAP program aims to increase access to ALS treatments, while also collecting valuable safety and biomarker data from a patient population typically underrepresented in randomized trials. This data can help shape future ALS research and support broader approval of new treatments for the ALS community.
“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.
