From Left to right: Fatema Shikora with Jennifer Chickering of Tisento Therapeutics, Jared Goettemoeller with Dr. Tyler Story of UCB, Linda Ramsey with Gene Kelly of Stealth BioTherapeutics.

At Mito Med’s Evening of Energy event, UMDF announced volunteer awards for 2024, including:

Fatema Shikora, the 2024 Heartstrings Award recipient. Fatema is currently a junior at the college preparatory high school Illinois Mathematics and Science Academy. Her involvement with UMDF and the mitochondrial disease community began as a tribute to her cousin, Zahra, who passed away from Leigh syndrome in March 2022. That loss motivated Fatema to take action to help others in the mitochondrial disease community. At school, she started a mitochondrial disease fundraising and awareness club and is serving as the Co-Chair for the 2024 Energy for Life Walk in Chicago. She has also decided to pursue a career in genetics, with hopes of becoming a geneticist dedicated to finding cures for inherited diseases like Leigh syndrome.
WATCH: Click here to watch a special award video about Fatema on Facebook.

Jared Goettemoeller, the 2024 LEAP Award recipient. Jared was diagnosed with the mitochondrial disease, Thymidine kinase 2 deficiency (TK2d), as an infant, which would eventually impact his ability to walk, talk, eat, and breathe. Despite the need for adaptive devices such as a wheelchair, g-tube, and ventilator, Jared dedicated his life to learning, earning an undergraduate degree from the University of Dayton and a master’s degree in physics from the University of Miami. Over the past few years, Jared has become a significant voice in the TK2d community, helping to educate clinicians and researchers and support affected families living with the disease.
WATCH: Click here to watch a special award video about Jared on Facebook.

Linda Ramsey, the 2024 Energy Award recipient. For more than two decades, Linda has devoted her time and energy to helping others in the mitochondrial disease community. Her volunteerism at UMDF dates all the way back to 1997 following the passing of her son, Kevin, from mitochondrial disease — which years later would be attributed to Leigh syndrome. Linda channeled her grief into organizing a fundraiser in her town in Western New York, for, what was then a fledgling UMDF – just a year into the organization’s existence. From those humble beginnings, she has become a pioneer for the mito community, joining – and eventually leading – support groups for Western NY, participating and leading Energy for Life walks, becoming a UMDF Support Ambassador, helping to educate clinicians and the public, and advocating on Capitol Hill.
WATCH: Click here to watch a special award video about Linda on Facebook.

From Left to right: UMDF’s Philip Yeske, PhD, with Dave Keane; Dr. Russell Saneto of Seattle Children’s Hospital with Dr. Bruce Cohen of Akron Children’s Hospital

Dave Keane, the 2024 Stanley A. Davis Leadership Award recipient. Dave has a long and storied career serving the mitochondrial disease community. He started his career as a pharmaceutical representative in 1985. After over a decade in pharmaceuticals, Dave moved into a sales role with Athena Diagnostics in 1998, parlaying his industry experience into genetics, which would become his focus for the next 25 years. In the early 2000s, mitochondrial disease piqued his interest, which would eventually lead to his attendance at more than 20 UMDF Mitochondrial Medicine conferences. Dave eventually took on a lead role as a UMDF supporter, becoming an instrumental part of UMDF’s “Grand Rounds” program that helped educate thousands of clinicians nationwide about mitochondrial disease. His career has taken him from Athena Diagnostics, Transgenomic, and GeneDx, to Variantyx, where he most recently served as Vice President of Business Development and worked closely with the mitochondrial disease community to expand access to genetic testing.
WATCH: Click here to watch a special award video about Dave on Facebook.

Dr. Russell Saneto of Seattle Children’s Hospital, the 2024 Vanguard Award recipient.
See special video content below, including:

WATCH: Dr. Saneto, in his own words  Part 1 | Part 2 | Part 3

WATCH BELOW: Dr. Saneto’s patients, coworkers, family, and friends congratulate him on the award.​​