PRESSROOM
Race for Research is CureSHANK’s inclusive global community fundraising event. Taking place June 1 through August 31, 2025, the event is inspired by the incredible journey of Phelan-McDermid Syndrome (PMS) dad Tom Giles, who will run nine marathons in nine days to raise funds for research and drug discovery projects to help his son Jenson and thousands like him around the world. Race for Research encourages and inspires people to come together to support Tom or create their own imaginative fundraising challenge with a digital kit provided by CureSHANK.
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Who’s Who in the Race for Research
Tom Giles is a dedicated runner and the founder and managing director of Thrive Sports Co. On June 27, 2025, Tom will embark upon the race of his life: nine marathons in nine days from Bath (Somerset), where he lives with his wife and their three children, to Land’s End (Cornwall), England. Tom is running to raise much-needed funds for the development of therapeutic treatments for his son Jenson, who has PMS, and others like him all over the world. Along his nine-day run, he’ll be joined, both in person and virtually, by a global team of runners united by our quest to raise funds for Phelan-McDermid Syndrome research. Tom’s Global Challengers include:
Federico Bolagnani - CureSHANK Strategic Adviser, Switzerland, June 27
Patrizia Perluzzo – Aunt of Santino, Canada, June 27
Ryotaro Hiyama – Dad of Rui, Japan, June 28
Miriam Rowen Levey – Mom of Cana, Ireland, June 28
Juliana Uva – Mom of Santi, Argentina, June 29
Ingrid Loureiro de Alvarenga – Mom of Isa, Brazil, June 29
Natalie Blore – Friend of Olivia, Australia, June 30
Daniel Ruiz and Sarah Goldberg – Friends of Darus, Mexico, July 1
Emily Molter – Mom of Ella, USA, July 4
Juli Cristi – Mom of Sergio, Spain, July 4
Carlos Leite – Dad of Leonor, Portugal, July 5
Race for Research and CureSHANK Fast Facts
Our 2025 Race for Research fundraising goal is $222,013, a number that represents the 22q13 region of chromosome 22, where a deletion or mutation of the SHANK3 gene is the cause of Phelan-McDermid Syndrome.
Race for Research is our third annual fundraising event. Our first campaign in 2023 was called Raise for Research, and it raised $92,000. With those funds, we effectuated two research grants related to epilepsy in Phelan-McDermid Syndrome patients and contributed to a study on regression in patients and another that validated the use of an at-home device to measure sleep in people with PMS and severe autism.
On July 25, CureSHANK is launching the first-ever Genetic Testing Action Day. The day is dedicated to educating patients and families about genetic testing and empowering them to talk about it with their physician. You can follow the GTAD movement at startgenetic.org.
CureSHANK, a research advocacy organization, was founded in 2019 by Geraldine Bliss, Abby Lievense, and Paulina Rychenkova, all parents of children with Phelan-McDermid Syndrome, who recognized the urgent need for accelerated treatments and therapies for people with PMS. CureSHANK bridges the translational research gap between basic science and successful clinical trials. We identify, support, and fund strategic projects for industry and academic investigators in alignment with the Food and Drug Administration’s (FDA) Patient-Focused Drug Development (PFDD) approach. Here are some examples of our projects:
Phelan-McDermid Syndrome Conceptual Model (2022) is a research project that assesses the symptoms and experiences of people with PMS, their families, and their caregivers. Our PMS Model helps develop strategies to measure meaningful treatment outcomes.
Externally Led Patient-Focused Drug Development Meeting (EL-PFDD, 2022), On November 8, 2022, CureSHANK held a groundbreaking meeting before the FDA, federal partners, medical product developers, and advocates about the impact of PMS on patients, families, and caregivers, their experience with currently available treatments, and what matters most to them in patient care, therapies, and quality of life. Our subsequent Voice of the Patient Report was published in the March 2024 edition of the Orphanet Journal of Rare Diseases. For more information, please see our Q&A.
Phelan-McDermid Syndrome Drug Development Symposium (PMSDDS), first held in Boston in 2024, this year PMSDDS will head to Barcelona on June 26 and 27. Led by a roster of distinguished speakers, this year’s symposium topics include drug development, clinical outcome measures and biomarkers, preclinical assays, and clinical trials.
CureSHANK’s License-Free Mouse Model, a recently announced endeavor, will launch in 2026. This industry-quality preclinical testing service will use our own PMS mouse model to mitigate high licensing fees and intellectual property barriers to PMS drug development by offering more accessible tools, services, and pathways to the global research community.
The CureSHANK Therapeutic Accelerator is an ambitious effort to transform promising technologies and scientific concepts with therapeutic potential in Phelan-McDermid Syndrome into investable assets that companies are highly motivated to pursue. In 2025, CureSHANK is laying the groundwork for this endeavor by researching, identifying, and launching the approaches that will most efficiently and effectively achieve this goal.
CureSHANK Biomarkers and Outcome Measures Consortium was formed in 2022 as a cooperative, globally aligned scientific group whose focus is on identifying and developing novel approaches for successful PMS clinical trials. Our recent annual Open Meeting detailed our progress and projects, including research grants, a burden of illness study, fluid biomarker development, and more.