Rare Genomics Institute Announces Winners of BeHEARD Science Challenge

September 11, 2015

The Rare Genomics (RG) Institute is delighted to announce the winners of the 2015 BeHEARD (Helping Empower and Accelerate Research Discoveries) science challenge, a global competition that offers rare disease researchers, who traditionally have difficulty attracting funding, grants of the latest life science innovations and technologies. This unique crowdsourced biotechnology competition allows many companies to gather together to make a difference for the rare disease community.

“This year alone, the competition received hundreds of outstanding quality submissions, coming from 99 universities and foundations located in 21 different countries”, said Dr. Claudia OuYang, BeHEARD Co-Director. “Over $600,000 worth of cutting-edge technologies were awarded to study 31 rare diseases.”

The winning proposals from BeHEARD 2015 will potentially yield key medical research insights to global research communities and have profound impact on therapeutic developments for rare disease patients.

One example is the BeHeard CRISPR mouse model, sponsored by Taconic Biosciences and Jackson Laboratory that was awarded to Dr. Carolyn Suzuki. This technology grant will allow her to work on CODAS syndrome, a rare multi-system developmental disorder.

Another winner, Michael Harris, a parent of Vici syndrome patient, says: “We are thrilled to receive this generous award on behalf of our son and other patients suffering from Vici syndrome. Though it is a devastating neurodegenerative disorder, this award will hopefully lead to new therapies and a better future for Vici syndrome patients.”

“David, a patient of Vici syndrome, and his mother. A unique mouse model with David’s disease mutation will be created by Taconic to potentially replicate the phenotype in human Vici syndrome for research study and therapeutic treatments to enable personalized medicine.”

Genome analysis platforms donated by Tute Genomics, Cypher Genomics, and Maverix Biomics were awarded to 13 research proposals to help identify disease genes and biomarkers in rare diseases. Drug repositioning services sponsored by Biovista were awarded to Steven Laffoon for the study of Acid Sphingomyelinase Deficiency, a rare and fatal neurodegenerative disorder.

Rare diseases affect more than 300 million worldwide, yet less than five percent of the 7,000 known rare diseases have treatments available. In light of the enormous diversity of research in the rare disease space, the BeHEARD challenge helps non-profits, academic researchers, rare disease advocacy groups, families of rare disease patients, and for-profit companies to collaborate in their collective mission to advance rare disease research.

“We want to congratulate the winners and thank everyone who participated: our sponsors, the reviewers, and all the applicants,” noted Dr. Arvin Gouw, BeHEARD Co-Director. “Their knowledge, resources and selfless support are crucial in our journey for fighting against rare diseases.”

More information about the 2015 BeHEARD winners can be found at the RG website:

For more information about the 2015 BeHEARD challenge, please visit:


2015 BeHEARD Technology Sponsors:

Taconic Biosciences (also the Corporate Sponsor)


The Jackson Laboratory

Tute Genomics

Cypher Genomics

Maverix Biomics

DNA Software



Collaborative Drug Discovery





Genetic Diagnostic Laboratories

Neuro-genetics Institute


About Rare Genomics Institute

Rare Genomics is an international 501(c) 3 non-profit that makes cutting edge research technologies of genome sequencing, physicians and scientists around the world accessible to rare disease patients. Rare Genomics helps families source, design and fund personalized research projects for diseases not otherwise studied helping rare disease patients find hope for a cure. By providing an expert network and an online crowdfunding mechanism Rare Genomics works alongside patients and their families, providing them with the necessary tools, knowledge, and connections so that they can better understand the cause of their disease.

For further information on Rare Genomics, please visit


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