named programs · 4 · from sources
What they call their work
Family Research Day
Annual event at the Sanger Institute bringing together families, scientists, and clinicians to share insights and advance research
Liquid Biopsy for Rhabdomyosarcoma
Funds development of a non-invasive blood test to detect and monitor rhabdomyosarcoma, with pilot findings published in the Journal of Clinical Oncology
Relapse and Refractory Disease Research Grant
$1 million grant program to study the genetic and molecular causes of relapse in rhabdomyosarcoma
mRNA RMS Vaccine Research
Supports pioneering research at the University of Oxford exploring mRNA vaccine technology for treating rhabdomyosarcoma
activities · 4 groups
What they do
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Rare Genetic Disease Research and Advocacy 1 activity
- Building capacity for rhabdomyosarcoma advocacy and researchCo-founded and expanded the Arcs model to connect families and researchers, enabling pooled resources for advancing cures and better treatments. Leads new Arcs initiatives such as Neive’s Arc and supports structural growth of the international family-scientific network.
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Biomedical Research and Innovation 1 activity
- Conducting and sharing collaborative research on rhabdomyosarcomaEngages in and disseminates research findings on rhabdomyosarcoma, including biannual reviews of early-phase treatments for relapsed and refractory cases conducted with the University of York, and collaborative mRNA vaccine research with the University of Oxford.
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Cancer Research Funding 1 activity
- Funding rhabdomyosarcoma researchFunds high-impact research projects aimed at finding a cure and developing less harsh treatments for rhabdomyosarcoma, including support for clinical trials, genomic datasets, and investigations into genetic mutations influencing treatment response. Has invested over £1.7 million in research since 2015, including grants to institutions such as the University of Oxford, Wellcome Sanger Institute, and Children’s Hospital of Philadelphia.
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Recreational and Emotional Support Programs for Children with Serious Illnesses 1 activity
- Providing family support and well-being servicesOffers direct family well-being services, including support groups and online platforms (Arcs) that enable families affected by rhabdomyosarcoma to share stories, fundraise, and advocate. Hosts family research engagement events and supports network expansion, with 24 Arcs established across the UK.
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financials · form 990 · fy2024
revenue
Total revenue$332K
Contributions & grants$332K100%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$259K
Program expenses97%
Admin / overhead3%
Fundraising0%
Salaries & benefits$0
Grants paid out$250K
Largest expense lineProfessional Fees
balance sheet
Total assets$154K
Cash$154K
Investments$0
Liabilities$0
Net assets$154K
Liquid reserves7.1 mo
2 years on record · 2023–2024 · YoY revenue +279.4%
leadership · form 990 part vii · fy2024
Who runs it
board members · 6
- Abbe Pannucci — Director
- Caroline Lapidus — Secretary
- David Wakeling — Director
- Gavin Lindberg — Director
- Karen Buzard — Treasurer
- Sara Alison Louise Wakeling — Chair
relationships · 43
Who they work with
- A&O Shearman Partner — David Wakeling and Karen Buzard are partners at A&O Shearman; David co-founded Alice's Arc and Karen joined the US board, contributing legal and financial expertise.
- Children with Cancer UK Partner — Partners with Alice's Arc US through an innovative charity funding model to support pediatric cancer research.
- Children’s Hospital of Philadelphia Partner — Hosts research on rhabdomyosarcoma funded by Alice’s Arc US Inc and the St. Baldrick’s Foundation.
- Emma’s Children’s Hospital in Amsterdam Partner — Conducted the AMORE procedure, including surgery and brachytherapy, for Alice’s relapse treatment.
- European Paediatric Soft Tissue Sarcoma Study Group Partner — Funding the roles of Scientific Project Manager and Statistician for the group and collaborating on rhabdomyosarcoma research.
- Frontline and Relapse Study in Rhabdomyosarcoma (FaR-RMS) Partner — Collaborates on a clinical trial studying treatment for newly diagnosed and relapsed rhabdomyosarcoma patients across Europe.
- Gavin Lindberg Partner — Board member of Alice's Arc US Inc and President of Evan's Victory Against Neuroblastoma Foundation; collaborates on patient advocacy and research initiatives.
- Great Ormond Street Hospital Partner — Collaborates through clinical and research partnerships in pediatric oncology.
- Great Ormond Street Hospital Partner — Collaborates with clinicians and researchers at Great Ormond Street Hospital on rhabdomyosarcoma.
- Great Ormond Street Hospital Partner — Provided oncology care and treatment for Alice, including diagnosis, chemotherapy, and palliative care.
- Institute of Cancer Research Partner — Recipient of funding from Alice's Arc for rhabdomyosarcoma (RMS) research.
- Institute of Cancer Research Partner — Works with expert scientists and clinicians at the Institute of Cancer Research on rhabdomyosarcoma research.
- Lush Partner — Partnered with Alice's Arc via Dexter’s Arc to raise funds through product sales.
- National Cancer Institute Government — Gavin Lindberg serves as a patient advocate on NCI committees including the Pediatric Immunotherapy Network and Pediatric & Adolescent Solid Tumor Steering Committee.
- NexTGen (Cancer Grand Challenge) Partner — Sara Wakeling and Abbe Pannucci serve as patient advocates on the NexTGen team focused on developing CAR T cell therapy for childhood solid tumors.
- Nuffield Department of Medicine, University of Oxford Partner — Collaborates on a research project to develop and test an mRNA vaccine for rhabdomyosarcoma.
- Royal Marsden Hospital Partner — Works with clinicians and researchers at the Royal Marsden Hospital on rhabdomyosarcoma research.
- SBF EPICC Partner — Jointly launched a Request for Applications to fund a $750,000 rhabdomyosarcoma research grant.
- Sir William Dunn School of Pathology, University of Oxford Partner — Co-leads a research initiative with Alice's Arc to develop mRNA vaccines for pediatric rhabdomyosarcoma.
- St. Baldrick's EPICC team Partner — Collaborated to award the first rhabdomyosarcoma research grant in the USA.
- St. Baldricks EPICC Team Partner — Collaborated to award the first rhabdomyosarcoma research grant in the USA.
- St. Baldricks EPICC Team Partner — Collaborated with Alice's Arc to award a $750K research grant for rhabdomyosarcoma.
- St. Baldrick’s Foundation Partner — Collaborates to fund rhabdomyosarcoma research through a joint grant initiative.
- St. Baldrick’s Foundation Partner — Collaborates with Alice's Arc US on the EPICC Consortium to fund and conduct rhabdomyosarcoma research.
- St. Baldrick’s Foundation Partner — Gavin Lindberg is a member of the St. Baldrick’s EPICC Team advancing pediatric immunotherapies for childhood cancer.
- UCL Great Ormond Street Institute of Child Health Partner — Works with experts at the UCL Great Ormond Street Institute of Child Health on rhabdomyosarcoma research.
- University College London Partner — Recipient of funding from Alice's Arc for rhabdomyosarcoma (RMS) research.
- University of Birmingham Partner — Collaborates with scientists at the University of Birmingham on rhabdomyosarcoma research.
- University of Birmingham Partner — Hosted a family research engagement day.
- University of Birmingham Partner — Recipient of funding from Alice's Arc for rhabdomyosarcoma (RMS) research.
+ 13 more
strategies · 4
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Accelerated Translational Research via Targeted Fundingmethodology: translational_research_accelerationBy funding high-risk, innovative translational research—such as mRNA vaccines and immunotherapies focused on the PAX:FOXO1 fusion—the organization accelerates the development of gentler, more effective treatments, moving discoveries from bench to bedside faster than traditional funding mechanisms allow.
- Family-Scientist Collaborative Research Modelmethodology: family_scientist_collaborationBy integrating families' lived experience with scientific expertise, research priorities become more patient-centered and responsive, leading to higher-impact studies and greater community buy-in for clinical translation. This co-creation model strengthens trust and alignment between researchers and affected families.
- Global Collaborative Research Networkmethodology: global_research_collaborationBy fostering data-sharing and collaboration across global institutions, clinicians, and researchers, the organization overcomes fragmentation in rare cancer research, enabling larger, more robust studies and faster progress toward cures for rhabdomyosarcoma.
- Unified Advocacy Through Collective Mobilizationmethodology: unified_global_advocacyBy uniting families, clinicians, and charities into a coordinated advocacy network, the organization amplifies its policy influence, driving systemic changes in research funding and treatment access that individual actors could not achieve alone.