2024 ALS TDI Leadership Award Winners
The ALS Therapy Development Institute (ALS TDI) Leadership Awards are presented to people who have been nominated by our community in recognition of their exemplary leadership in the fight against ALS.
ALS TDI is proud to announce the 2024 Leadership Award recipients: Molly and Carson Wheeler, Della Larsen, The Hopkins Family, John and Tracy Schinharl, Pat Dolan, and Dr. Mike Ibarra. We are thrilled to share that many of the honorees will be present at this year’s ALS TDI Summit and White Coat Affair Gala.
You can read the descriptions of the awards and see the past award winners here.
2024 Leadership Award Winners
Alexander Heywood Award - Molly and Carson Wheeler
Molly and Carson have been hosting lemonade stands since 2021 to support ALS TDI and Racing for ALS. Not only have these girls been raising funds for ALS research, but they have also been spreading awareness. This year, they joined with “Kids Quest to End ALS” to host another lemonade stand, and they also held a Christmas in July lemonade and ornament sale. They even went on the “I Lost My Person” podcast to raise more awareness about ALS and their fundraising efforts.
They have enlisted the help of their cousins, friends, and North Carolina community members to raise funds for ALS research. They do so in memory of Cory Burell, Angela Stanley, David Lloyd Jr., and all those who we have lost to ALS. Through these efforts, they have raised close to $6,000 in total for ALS research! Molly and Carson have proven that no matter your age or size you can make a difference in the lives of others. With their beautiful smiles and delicious lemonade, they are spreading hope to the ALS community!
Fran Delaney Challenge & Respect Award - The Hopkins Family
In 2021, John (Hop) Driskell Hopkins, a Grammy-winning multi-instrumentalist, vocalist, and founding member of the Zac Brown Band, was diagnosed with ALS. Soon after, he co-founded the Hop on a Cure Foundation to raise awareness and funds for ALS research.
Hop’s co-founder is his indefatigable wife Jennifer. While being an active Mom to their three daughters, Grace, Faith, and Hope, Jen helps to manage many of Hop On A Cure’s activities. David Hopkins, John's brother, serves as Vice President of Community Investments of the Foundation and is a perennial participant at ALS science gatherings across the country.
The Hopkins family has reached millions of people through their advocacy, raising awareness about ALS and providing nearly $2 million in research funding to institutions like ALS TDI, MGH, Duke ALS Clinic, Houston Methodist, and the Packard Center.
Mary Lou Krauseneck Courage & Love Award - Della Larsen
Della Larsen was diagnosed with ALS in April 2023 and made waves earlier in 2024 when she found a unique way to preserve her voice for her future grandchildren. Using voice banking technology, she recorded 30 children's books to ensure her future grandchildren can hear her reading to them, even as her ALS progresses. These recordings are accessible through QR codes placed in the physical books, linking to a private YouTube channel.
Since her diagnosis, Della has used social media to raise awareness and inspire hope as she shares her journey and shows how she adapts to the challenges of living with ALS.
Stephen Milne Adventurous Spirit Award - John and Tracy Schinharl
John and Tracy Schinharl, both Oregon, OH natives, launched the "Toledo Takes on ALS" beer festival to raise funds for ALS research after John's ALS diagnosis in 2022. Inspired by a visit to the ALS Therapy Development Institute (ALS TDI), the couple is committed to supporting research to find cures. Their event, in partnership with Ales for ALS™, combines their passion for beer with their mission to increase awareness and funding for ALS research, raising over $520,000 for ALS research in just two years.
Toledo Takes on ALS is a perfect example of how a community can gather together to make a difference in ALS research!
Stephen Heywood Patients Today Award- Pat Dolan & Dr. Mike Ibarra
Pat Dolan
Pat Dolan is a Geographic Information Systems (GIS) professional with 25 years of experience applying geospatial technology in the utility industry. In 2016, he was diagnosed with ALS and immediately wanted to apply his skills to advance the science of ALS. With the help of his colleagues at Esri, he developed the ALS Geospatial Hub, which brings information together by geography to discover patterns and relationships to improve care, accelerate research, and advocate for the ALS community.
Pat developed the first ALS clinic spatial database by partnering with the ALS Association, Veterans Administration, International Alliance, and the World Health Organization to map ALS / MND clinics and neurologist offices worldwide. He uses the clinic database to show where care is most needed.
He has worked with the CDC National ALS Registry to map the place history of ALS patients to identify common-lived locations and underserved ALS communities. He brought together GIS professionals, researchers, and advocates to develop maps and apps to support the ALS community. The group is called the Mappers. They developed the ALS Clinic Advisor platform that allows the ALS community to locate, rate, review, and add clinics worldwide.
Pat is currently working with ALS TDI researchers on a multi-year, CDC-funded project analyzing ALS Research Collaborative (ARC) data to identify potential ALS environmental lifestyle risk factors. He also contributed his expertise to ALS TDI's ALS Trial Navigator, developing a mapping feature to help people with ALS find trial sites near them.
Despite the challenges of ALS, Pat continues to innovate, collaborating with researchers in the community to expand these tools and provide critical resources for people with ALS worldwide. His work embodies resilience and dedication to supporting others.
Dr. Mike Ibarra
Mike Ibarra is a 31-year-old neurologist diagnosed with ALS in March 2023. As a promising doctor nearing the completion of his medical training, Mike’s life took an unexpected turn with the diagnosis. Despite this, he remains committed to his profession and now delivers grand rounds across the country, using his platform to educate others about ALS while sharing his journey through the disease. Dr. Ibarra has also played a crucial role in helping ALS TDI expand the ALS Research Collaborative (ARC) by sharing his experience for a national advertising campaign to show people how to get involved in the ARC study. Dr. Ibarra has displayed inspiring resilience and dedication as he navigates his medical career while living with ALS.
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