We actively promote and support collaboration amongst researchers, medical professionals, foundations and families.

No man is an island, entire of itself…

Though John Donne composed this well-known saying in 1624, it is especially relevant to scientific research today. As scientific and technological breakthroughs increasingly occur, it becomes more challenging for individuals to conduct this kind of research on their own. This reality not only creates more occasion for collaboration, it necessitates it.

See who we collaborate with and support below.

Angioma Alliance

Angioma Alliance is a non-profit, international, patient-directed health organization created by people affected by cerebral cavernous malformations (CCMs). In 2010, they launched the first-ever patient registry for CCMs. This year we helped them with a platform upgrade to the registry that will collect and provide standardized data directly to researchers, and to enable mobile device functionality for both participants and research partners.  We participate in their annual CCM Scientific Conference in Washington DC., and their Chief Scientific Officer, Amy Akers, Ph.D, recently joined Scientific Advisory Committee.

Barrow Neurological Institute

We are forever indebted to Barrow for the expertise and surgical hands of Dr. Robert Spetzler who has successfully performed two craniotomies on our founder, Riley Callen.  His wisdom and encouragement have made our work here possible and led us to neurosurgeon and researcher, Dr. Joseph Zabramski. Dr. Zabramski’s team recently completed necessary preparation and design for a clinical research protocol at Barrow which promises to provide insight into the mechanism of propranolol’s effect on CCMs. He also recently joined our Scientific Advisory Committee.

Boston Children’s Hospital (BCH)

One of the very first grants we offered was to help fund Dr. Edward Smith’s research into the early detection of brain tumors and cerebrovascular disease through the use of biomarkers in urine. Since that time, we have developed a strong connection with BCH and especially Dr. Smith. His expertise in cerebrovascular disease has helped to guide our mission, and he recently joined our Scientific Advisory Committee.

Pediatric Brain Tumor Foundation (PBTF)

This year we will participate in PBTF’s annual conference in Portland, Oregon.  Our founder, Riley Callen, age 15, will be one of the keynote speakers at this event.

2018 Micro-Grant Winners

Our 2018 Micro-Grant winners are promoting collaboration amongst researchers, doctors, and institutions.

  • Mirrx Therapeutics, Angioma Alliance, Centenary Institute, Duke University, University of Chicago and Axolabs are collaborating to develop a Blockmir CD5-2 that may be used to treat CCM.
  • University of Pennsylvania (PennCHOP), University of Chicago, and University of New Mexico collaborate on a translational research project investigating the effects of the gut microbiome on cerebral cavernous malformation (CCM) disease in human patients.
Learn More About Research