CPAG Steering Committee
The role of the Coalition of Patient Advocacy Groups (CPAG) Steering Committee is to help facilitate the development of activities that will benefit the entire CPAG membership. Those activities include (but are not limited to) webinars, in-person meetings, and one-on-one connections with other CPAG members and RDCRN researchers.
CPAG Steering Committee members make a commitment to attend monthly one-hour teleconference meetings and to participate collaboratively with other members on projects identified to help accelerate research as outlined in the CPAG vision and mission statements. In addition, CPAG Steering Committee members disseminate information and decisions from the CPAG Steering Committee meetings to PIs and other individual consortium PAG members in a timely manner.
CPAG Steering Committee
Patient Advocacy Group Representatives
2025-2026
| CONSORTIUM | NAME | PATIENT ADVOCACY GROUP | |
|---|---|---|---|
| Advancing Craniosynostosis Treatment Rare Diseases Consortium (ACT) | Carolina Sommer | carolina@bornahero.org | BORN A HERO |
| Advancing Rare Disorders: Vascular mAlformation Research Network with CaNVAS (ARDVARC) | Mellenee Finger | mellenee@gmail.com | K-T Support Group |
| Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus Research Network (ARISEN) | Michael Devlin | michael.devlin@sumairafoundation.org | Sumaira Foundation |
| Batten Disease Clinical Research Consortium (BDCRC) | Suzanne James | diette528@gmail.com | Batten Disease Support & Research Association |
| Brain Vascular Malformation Consortium (BVMC) | Marianne Clancy | mariannes.clancy@curehht.org | The HHT Foundation International |
| Brittle Bone Disorders (BBD) | Tracy Hart | thart@oif.org | Osteogenesis Imperfecta Foundation, Inc. |
| Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) | Brian Lin | blin@mdausa.org | Muscular Dystrophy Association (MDA) |
| Congenital and Perinatal Infections Consortium (CPIC) | Kristen Spytek | kristen.spytek@nationalcmv.org | National CMV Foundation |
| Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) | Mary Jo Strobel | mjstrobel@apfed.org | American Partnership for Eosinophilic Disorders |
| Developmental Synaptopathies Consortium (DSC) | Kristin Anthony | kristin@ptenfoundation.org | PTEN Foundation |
| The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) | Erica Barnes Melody Kiser | Chloe’s Fight Rare Disease Foundation FamilieSCN2A Foundation | |
| Initiation of a cohort to define pathogenic Mechanisms, Precision diagnosis And Complications of Thrombotic Microangiopathies: The IMPACT Study (IMPACT) | Beth McGraw | beth@ustma.org | United States Thrombotic Microangiopathy (USTMA) |
| Myasthenia Gravis Rare Disease Network (MGNet) | Allison Foss | allisonfoss@mgakc.org | Myasthenia Gravis Association |
| Network for Advancing Sex Chromosome Aneuploidy Research Readiness (NASCARR) | Erynn Fishman | erynn.fishman@gmail.com | Association for X and Y Chromosome Variations (AXYS) |
| North American Mitochondrial Disease Consortium (NAMDC) | Philip Yeske | Philip.Yeske@umdf.org | United Mitochondrial Disease Foundation (UMDF) |
| Pediatric Fungal Network STudy of Rare Invasive Fungal DisEases in Immunocompromised Pediatric Patients (PFN-STRIDE) | Rob Purdie | rpurdie@fightfungus.org | MYCARE |
| Phenylalanine Families and Researchers Exploring Evidence (PHEFREE) | Kelsey McQueen, Chair | kmcqueen@npkua.org | National PKU Alliance (NPKUA |
| Rare Bronchiectatic Diseases Consortium (RBDC) | Michele Manion | mmanion@pcdfoundation.org | PCD Foundation |
| Rare Organic Acidemias Research Consortium (ROAR) | Jill Chertow Kathy Stagni | Propionic Acidemia Foundation Oraganic Acidemias Association | |
| Spastic Paraplegia Centers of Excellence Research Network (SP-CERN) | Norma Pruitt | Pruitt@SP-Foundation.org | Spastic Paraplegia Foundation, Inc. |
| Urea Cycle Disorders Consortium (UCDC) | Jill Williams | jwilliams@nucdf.org | National Urea Cycle Disorders Foundation (NUCDF) |
*In alphabetical order by consortium