It Takes a Village

Emily is an MD/PhD Trainee at the University of Pennsylvania Perelman School of Medicine whose PhD work focused on ultra-rare pediatric neurogenetic syndromes. The highlight of this work for her was the opportunity to partner directly with families of loved ones with these conditions to shape research and advocacy, which led to her joining the Board of Directors for The TBCK Foundation. So, when Yentli put out the call to launch PennMed Trainees Against ALS/FTD, Emily was very excited to work with Yentli to launch and lead the initiative. She has had the opportunity to support Core Operations from the group’s inception and contribute to Push-ups for ALS, Search for a Self Cure, Novel Biomarker Platform, and the Longitude Prize on ALS submission.

Contributions: Core Operations, PennMed Trainees Against ALS/FTD, Push-ups for ALS, Search for a Self Cure, Novel Biomarker Platform, Longitude Prize on ALS submission

Vicky is a 3rd-year undergraduate student at Florida State University studying Cell and Molecular Neuroscience with a minor in Chemistry. At FSU, she is engaged in research on heart disease and TMS for depression and social anxiety. She has always had an interest in helping find a cure for ALS, so when she came across Yentli’s Instagram, she immediately reached out and began offering her help. So far, Vicky has helped Yentli with graphic design and outreach for Push-Ups for ALS and organization for the CureC9 website. Vicky plans to apply to medical school soon to pursue her dreams of becoming an MD/PhD neurologist and helping patients with these debilitating diseases.

Contributions: Core Operations, Push-ups for ALS, Imaging Biomarkers of C9 Disease Divergence, Drug Repositioning and Rescue for ALS

Kaylee Morris is a multimedia artist based in Philadelphia, specializing in film, animation, and illustration. In her time at University of the Arts & Moore College of Art and Design, Kaylee produced 3 animated student films and worked on a myriad of other independent film projects. As an artist and collaborator, Kaylee values out-of-the-box thinking and always tries to approach creative endeavors with a fresh perspective.

Contributions: CureC9 logo, CureC9 website original illustrations, Search for a Self Cure original illustrations

Arielle (they/them) is a Jewish scholar, artist, certified Kripalu Mindful Outdoor Guide, and farmer based in Boston. They have a master’s in Jewish Gender and Women’s Studies from the Jewish Theological Seminary where they wrote their thesis on Mara Benjamin’s scholarship as a source for creating a new Jewish ecofeminist ethics. Beyond education and Earth-based adventures, Arielle supports organizations in project excellence and system creation. Arielle became connected to the fight to end ALS/FTD when Yentli married their cousin Sam and became an important family member. Throughout the Push-Ups for ALS planning, Arielle oversaw volunteers, sponsors, vendors, and event logistics — acting as Yentli’s project manager.

Contributions: Core Operations, Push-Ups for ALS

Izzi Stern is an independent consultant and executive coach and serves as an adjunct instructor in the School of Education at American University (AU). She is an experienced higher-education professional with over a decade of designing and leading student-centered initiatives that cultivate belonging, engagement, and success. She’s skilled in managing complex programs, coordinating cross-functional training, and guiding thoughtful curriculum planning to create impactful, equity-driven learning environments.

In her current work, Izzi partners with individuals and organizations to strengthen operations, clarify priorities, and support sustainable growth through a combination of strategic consulting and reflective coaching. She holds a doctorate in Learning and Leadership in Organizations from Vanderbilt University and completed the Executive Coaching Certificate Program through the Graduate School of Education at the University of Pennsylvania.

Izzi has supported Yentli with core operations, contributed blog writing for the Search for a Cure video series, and helped coordinate logistics for the Push-Ups for ALS fundraiser.

Contributions: Core Operations, Push-ups for ALS, Search for a Self-Cure

Malhaar is originally from New York City. He is currently an MD student at Penn, and before medical school he studied computational biology at MIT. His academic interests are centered on clinical and translational research — particularly how trial design, patient selection, and real-world data influence the development of new therapeutics. He has spent time working on healthcare market analysis at the White House Council of Economic Advisers and in consulting, which shaped how he thinks about evidence generation and decision-making in medicine. He’s especially interested in improving clinical trial efficiency and bridging the gap between research and clinical care.

Contributions: Core Operations, PennMed Trainees Against ALS/FTD, Push-ups for ALS, Search for a Self Cure

Amanda is a research nurse at Rady Children’s in Southern California, specializing in pediatric deep brain stimulation for neuromovement disorders. Within the last few years — and her own mother’s FTD diagnosis — Amanda, like Yentli, found herself having a positive C9orf72 gene mutation. This led her to discover Yentli’s pursuit within the realm of neurodegenerative ALS/FTD. Amanda has assisted Yentli and the team with the Search for a Cure video series, the Push-Ups for ALS fundraiser, and art coordination within the PennMed Trainees Against ALS/FTD group. She is excited to continue her volunteer work within all of Yentli’s campaigns to search for a cure.

Contributions: Core Operations, PennMed Trainees Against ALS/FTD, Push-ups for ALS, Search for a Self Cure

Zuleika Johnson is the Founder and CEO of Luna Philanthropy, an equity-focused consultancy that helps organizations develop sustainable, inclusive fundraising practices. Her work centers on growing philanthropy in communities of color, strengthening development strategy, and building programs that reflect the diversity of the communities they serve. She brings over 14 years of experience in fundraising and advising mission-driven organizations.

Zuleika’s connection to ALS is deeply personal. After her father was diagnosed with ALS, she became his primary caregiver, supporting him through every stage of the disease. Following his passing, it was discovered that he carried a genetic mutation linked to ALS, making the reality of this disease deeply personal for her as well. As a mother of two, this has strengthened her commitment to advancing research and helping change the future for her children and others.

She connected with Yentli through social media and now supports CureC9 through fundraising strategy, including contributions to the Push-Ups for ALS campaign. She serves as a fundraising coach and advisor across Yentli’s initiatives, helping strengthen outreach, donor engagement, and campaign planning.

Contributions: Core Operations, Push-Ups for ALS, Fundraising Strategy & Advisory

Ashley is a business owner and mother of two based in Florida who became involved in ALS advocacy after her mother was diagnosed with bulbar-onset ALS at age 59 and passed away just two weeks later. Her mother’s case was later linked to the C9orf72 gene, making Ashley’s involvement in this work both urgent and deeply personal — as a possible carrier herself.

Like many families affected by ALS, Ashley was suddenly thrust into a world of unknowns and rapid decision-making. What began as a period of grief and adjustment has evolved into a sustained commitment to action. She now works with Yentli and her team to support efforts focused on advancing research and accelerating progress toward a cure for C9orf72-related ALS.

Contributions: Core Operations, Push-ups for ALS

Priscilla Moreno is a fine artist and muralist based in Fullerton, CA. She frequently collaborates with companies on branding development and visual identity. She recently illustrated a children’s book, and she also designs the can-art graphics at Everywhere Brewery. You can find her murals in Orange County, Portland, San Diego, and Ohio. Her work draws viewers into a world of magic, sharing messages of hope and love.

Contributions: PennMed Trainees Against ALS/FTD logo

Matheus is a master’s student and research assistant at the University of Florida focusing on neurosymbolic AI to build more interpretable and reliable systems. He has worked on research across the Florida Institute for National Security, Carnegie Mellon University, and Microsoft Research, and was recently inducted into the University of Florida Hall of Fame.

He supports Yentli’s work through both technical and operational contributions, including website development and stepping in to resolve time-sensitive issues to keep projects running smoothly. Matheus plans to pursue a PhD in neurosymbolic AI, with a focus on building transparent and ethically grounded AI systems.

Contributions: Core Operations, Website Support