A Global Challenge for PHELAN-MCDERMID SYNDROME (PMS)

Join a worldwide community uniting to raise $222,013 for breakthrough treatments for Phelan-McDermid Syndrome.

JUNE - AUGUST 2025

JOIN THE CURESHANK Challenge

HELP US RAISE $222,013 TO FUND CRITICAL RESEARCH & TREATMENTS FOR PMS

Our goal represents the 22q13 region of chromosome 22, where a deletion or mutation of the SHANK3 gene causes Phelan-McDermid Syndrome (PMS).

CureSHANK is accelerating critical research and treatments for people living with PMS, a devastating neurodevelopmental disorder.

want to help us spread the word?

WAYS TO PARTICIPATE

  • Create Your Challenge

    Launch your own fundraiser with our ready-to-use toolkit. Whether you're running, walking, or hosting a creative event, we'll provide everything you need—from customizable templates to social media graphics—to make your challenge a success.

    START YOUR FUNDRAISER

  • JOIN AN EXISTING TEAM

    Connect with our global Race for Research teams and amplify their impact. Browse our team directory and help them reach their fundraising goals as part of our collective mission for PMS research. Your participation brings us closer to breakthrough treatments.

    FIND A TEAM

  • SUPPORT OUR CHALLENGERS

    Make a direct donation to our Global Challengers as they push their limits for PMS research. From Tom's 9-marathon journey to challengers across five continents, your contribution fuels their determination and funds vital research for breakthrough therapies.

    DONATE NOW

FEATURED CHALLENGE:

TOM'S JOURNEY

A Father’s Challenge to Race for PMS Research

Inspired by a PMS dad's extraordinary challenge across England's southwest coast, we invite you to make a difference your way. Whether you run, walk, host an event, or simply donate, you'll help accelerate life-transforming therapies for thousands living with PMS.

  • Tom Giles isn't just a dedicated runner and the founder of Thrive Sports Co. — he's a father on a mission. On June 27, Tom will embark on an extraordinary challenge: running nine marathons in nine days from Bath to Land's End along England's southwest coast.

    This incredible journey isn't just about physical endurance. It's about a father's love for his son Jenson, who lives with Phelan-McDermid Syndrome, and his determination to help thousands of families like his around the world.

    "Every step I take is for Jenson and the thousands of people worldwide living with PMS who deserve breakthrough treatments and a brighter future.” - Tom Giles

SUPPORT TOM’S CHALLENGE

  • Bath (The Rec) → Glastonbury

    Joined by: Jenson Giles & Andy Tinner

    Virtually: Federico Bolognani (Switzerland) & Patrizia Perluzzo (Canada)

  • Glastonbury → Chard (Chard RFC)

    Joined by: Oli Stacey

    Virtually: Ryotaro Hiyama (Japan) & Miriam Rowen Levey (Ireland)

  • Chard → Exeter

    Joined by: Oli Stacey & Tom Fogarty

    Virtually: Juliana Uva (Argentina) & Ingrid Loureiro de Alvarenga (Brazil)

  • Exeter (Sandy Park) → Okehampton (RFC)

    Joined by: Kim Giles & Alice Oliver

    Virtually: Natalie Blore (Australia)

  • Okehampton → Liskeard

    Joined by: Alistair Giles

    Virtually: Daniel Ruiz & Sara Goldberg (Mexico)

  • Liskeard → Charlestown (Pier House Hotel)

    Joined by: Alistair Giles

  • Charlestown → Falmouth

    Joined by: Alistair Giles

  • Falmouth → Penzance

    Joined by: Alistair Giles

    Virtually: Emily Molter & Derek Miller (USA) & Juli Cristi (Spain)

  • Penzance → Land’s End (Man v. Coast)

    Joined by: Alex Giles & Luke Giles

    Virtually: Carlos Leite (Portugal)

THE ROUTE: 9 DAYS, 9 MARATHONS

MEET OUR GLOBAL CHALLENGERS

RACING ACROSS 5 CONTINENTS FOR A CURE

Our Global Challengers are uniting across time zones and borders with one mission: accelerating breakthrough treatments for Phelan-McDermid Syndrome.
These dedicated people – many of whom are parents, family members, or friends of someone living with PMS – are running in solidarity with Tom’s epic journey of 9 marathons in 9 days.

Each Global Challenger brings their unique story and determination to our fundraising challenge, demonstrating that when we unite for a common cause, distance disappears. Their efforts amplify our impact and bring hope to PMS families worldwide.

  • Federico Bolognani

    CureSHANK Strategic Adviser

    Switzerland

  • Patrizia Perluzzo

    Aunt of Santino

    Canada

  • Ryotaro Hiyamu

    Dad of Riu

    Japan

  • Miriam Rowen Levey

    Mom of Cana

    Ireland

  • Juliana Uva

    Mom of Santi

    Argentina

  • Ingrid Loureiro de Alvarenga

    Mom of Isa

    Brazil

  • Natalie Blore

    Friend of Olivia

    Australia

  • Daniel Ruiz & Sara Goldberg

    Friends of Darus

    Mexico

  • Emily Molter & Derek Miller

    Mom & Uncle of Ella

    United States

  • Juli Cristi

    Mom of Sergio

    Spain

  • Carlos Leite

    Dad of Leonor

    Portugal

  • Will it be you?

  • WILL IT BE YOU?

ABOUT THE CAUSE

  • Understanding Phelan-McDermid Syndrome

    Phelan-McDermid Syndrome (PMS) is a highly disabling neurodevelopmental disorder caused by pathogenic changes to the SHANK3 gene. While fewer than 4,000 patients have been diagnosed worldwide, research suggests that 1 in 10,000 people may have PMS, accounting for at least 2% of individuals with both autism and intellectual disability.

    Common manifestations include:

    • Autism spectrum disorder
    • Intellectual disability
    • Psychiatric episodes
    • Seizures
    • Disordered sleep
    • Hypotonia
    • Gastrointestinal issues

    Currently, there is no cure and no approved treatments for PMS; patients, families, caregivers, and physicians can only manage the symptoms.

  • CureSHANK's Mission

    Founded in 2019 by three PMS parents who recognized the urgent need for accelerated treatments, CureSHANK is a global research advocacy organization expediting life-changing therapies for people living with Phelan-McDermid Syndrome. We bridge the critical gap between basic science and successful clinical trials by identifying, supporting, and funding projects aligned with our mission.

  • What Your Support Funds

    Your participation in Race for Research directly supports vital initiatives, including:

    Research Grants: We’ve allocated nearly $300,000 toward research grants focused on epilepsy in PMS patients as well as regression and sleep measurement studies.

    Phelan-McDermid Syndrome Drug Development Symposium (PMSDDS): We annually bring together industry, distinguished researchers, and clinicians to advance PMS treatments, an endeavor costing up to $100,000/year

    License-Free Mouse Model and Testing Service: CureSHANK will launch the first-ever license-free SHANK3 mouse model and testing service in fall 2025 to remove financial barriers to PMS drug development. The service will cost at least $200,000 to develop and maintain.

    Therapeutic Accelerator: In the planning stages in 2025, this ambitious endeavor aims to transform promising PMS treatment technologies into investable assets that companies are motivated to pursue. It is a long-term project that will require $500,000+ to launch fully.

    Biomarkers and Outcome Measures Consortium: Our pre-competitive consortium of drug and biotech companies, currently financially supported by CureSHANK, is identifying and developing PMS-specific methods to more effectively evaluate the efficacy of treatments in clinical trials.

MERCHANDISE

SHARE YOUR RACE FOR RESEARCH PRIDE

Gear up for the challenge with merchandise that supports our cause! Our Race for Research collection features training essentials and casual wear that help spread awareness while supporting the cause. 100% of merchandise sale proceeds directly funds vital PMS research and treatments.

See Our

Worldwide Challenge

From Tom's journey across England to Challengers in five continents, our map showcases the worldwide community united for PMS research. Every pin represents someone taking action to accelerate treatments for Phelan-McDermid Syndrome, creating an unstoppable global force for change.

OUR GOAL: $222,013

Every dollar brings us closer to life-transforming therapies for thousands of people living with PMS.

Empower Your Fundraising Journey!

We've got everything you need to succeed. Share eye-catching social media graphics on Instagram and Facebook and make the most of our resources, including a Fundraising Guide full of tips and templates for social media and email. Everything you need to stay connected, inspired, and on track is right here.

Explore, get creative, and let's make this journey unforgettable!

SPONSOR THE CHALLENGE

WE ARE SEEKING CORPORATE AND MATCHING SPONSORS

Please contact abby@cureshank.org for more sponsorship information.

GET INVOLVED

Help us make strides towards breakthrough PMS treatments.
Engage with us on social media to spread the word and see campaign updates!