HELP US

JUNE - AUGUST 2025

JOIN THE GLOBAL Challenge

HELP US RAISE $222,013 TO FUND CRITICAL RESEARCH & TREATMENTS FOR Phelan-McDermid syndrome (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 breakthrough treatments for people living with PMS, a devastating neurodevelopmental disorder.

HELP US GET closer to the finish line!

Thanks to the generous support of our MATCHING sponsors, every dollar DONATED will be DOUBLED up to $45,000!

EVERY DOLLAR MAKES A DIFFERENCE

THANK YOU

to Jaguar Gene Therapy & the Grandparents of Charles Bliss for their generous gifts.

WE ARE SEEKING ADDITIONAL CORPORATE AND MATCHING DONORS TO HELP US REACH THE FINISH LINE.

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

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

MEET THE INSPIRATION BEHIND OUR CHALLENGE

TOM GILES

This past July, Tom Giles accomplished something extraordinary for CureSHANK—having run 9 marathons in 9 days along England's southwest coast from Bath to Land's End.

As founder of Thrive Sports Co. and father to Jenson who lives with Phelan-McDermid Syndrome, Tom transformed his personal mission into a global rallying cry for PMS research. Supported by his wife Kim, family, friends, and Global Challengers across five continents, his determination sparked a worldwide movement and kicked off our campaign.

Tom's race may be complete, but the impact continues, driving critical funding for life-transforming therapies and treatments for Phelan-McDermid Syndrome.

A Father’s Mission Becomes a Global Movement

"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

Explore Tom’s Journey Across the U.K.

  • Day 1: June 27

    Route: Bath → Glastonbury

    Distance: 28.6 mi

    Pace: 6:05/mi

    Time: 4h 40min

  • Day 2: June 28

    Route: Glastonbury→ Chard

    Distance: 26.42 mi

    Pace: 6:32/mi

    Time: 4h 37min

  • Day 3: June 29

    Route: Chard→ Exeter

    Distance: 29.28 mi

    Pace: 6:42/mi

    Time: 5h 15min

  • Day 4: June 30

    Route: Exeter → Okehampton

    Distance: 26.79 mi

    Pace: 7:24 /mi

    Time: 5h 19min

  • Day 5: July 1

    Route: Okehampton → Liskeard

    Distance: 26.72 mi

    Pace: 7:29/mi

    Time: 5h 21min

  • Day 6: July 2

    Route: Liskeard → Charlestown

    Distance: 26.48 mi

    Elev Gain: 2939.63ft

    Time: 5h 11min

  • Day 7: July 3

    Route: Charlestown → Falmouth

    Distance: 26.3 mi

    Pace: 7:12/mi

    Time: 5h 4min

  • Day 8: July 4

    Route: Falmouth → Penzance

    Distance: 26.73 mi

    Pace: 6:38/mi

    Time: 4h 45min

  • Day 9: July 5

    Route: Penzance → Land’s End

    Distance: 26.28 mi

    Elev Gain: 4,360ft

    Time: 5h 29min

SPONSOR THE CHALLENGE

Want to get involved?

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

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 Hiyama

    Dad of Rui

    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!

Download Social Media Graphics

DOWNLOAD EDITABLE CANVA GRAPHICS

GET INVOLVED

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