SYS-CON MEDIA Authors: Yeshim Deniz, Liz McMillan, Elizabeth White, Maria C. Horton, Andy Thurai

News Feed Item

The Global Genes Project Aims to Battle Rare Disease Through the 'Vote4Hope' Campaign and Pepsi Refresh Competition

Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As 'Ambassadors of Hope' To Win $250K Pepsi Grant For The Global Genes Fund

DANA POINT, Calif., Sept. 1 /PRNewswire-USNewswire/ -- All Kids Deserve To Have Hope For A Cure - The 'Vote4Hope' Pepsi Refresh Rare Disease Campaign starts today. The Children's Rare Disease Network ( and The Global Genes Project ( are inviting the public, as well as caregivers, family and friends of the millions of children who suffer from rare diseases and disorders, to 'Vote4Hope' throughout September during The Pepsi Refresh Project.

The 'Vote4Hope' Rare Disease campaign is designed to help drive awareness for the unmet medical needs of the global rare disease community, and to support the development of the Global Genes Project. The Pepsi Refresh 'Vote4Hope' campaign opens today at and will continue through September 30.

"We entered The Pepsi Refresh grant competition with the goal of continuing education surrounding rare diseases and to generate the global awareness the rare disease community deserves," said Nicole Boice, founder and president, Children's Rare Disease Network and the Global Genes Project. "Many rare diseases affect small numbers of patients and because of the rarity of each condition, the public is often unaware of these chronic and life threatening conditions. However, collectively millions of people worldwide have rare diseases and everyone knows an adult or child suffering from a rare condition."

If the Global Genes Project wins The Pepsi Refresh grant competition, funding will go to support further development of the Global Genes Fund. The Global Genes Fund is an innovative platform, which promotes as number of rare disease initiatives including 'in-a child's-lifetime' research and therapy development. The development of the Global Genes Fund will provide tremendous value to the millions of children, families and rare disease organizations that support them.

Time To Refresh Rare Disease Facts

A staggering 250 million people worldwide are estimated to suffer from approximately 7,000 different forms of rare diseases for which there are limited drug treatments. In the United States, statistics show that approximately 350 new drugs have been developed for the entire rare disease patient population since the passing of the Orphan Drug Act in 1983 despite incentives put in place by the federal government.

According to the National Institutes of Health (NIH), 30 million Americans are afflicted with a rare disease, or 1 in 10 people. The National Organization for Rare Disorders (NORD) estimates that of the 30 million people in the United States suffering from rare diseases, 50 percent or approximately 15 million, are children. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday.

Rare Kids Become 'Ambassadors of Hope'

Throughout the month of September and during the "Vote4Hope" Pepsi Refresh Rare Disease Campaign, pictures, stories and videos of children living with rare diseases will be featured on a daily basis on the Vote4Hope website:

Called the 'Ambassadors of Hope', these children are representing the 7000 different rare conditions and suffer from diseases including: Ataxia-Telangiectasia, Autosomal Recessive Polycystic Kidney disease, Batten disease, Branchiootorenal Syndrome, Canavan disease, Cystic Fibrosis, Dravet Syndrome, Duchenne Muscular Dystrophy, Fibrous Dysplasia, Joubert Syndrome, Mitochondrial Encephalomyopathy, Niemann Pick Type C, Hutchinson-Gilford Progeria, Spinal Muscular Atrophy, Subcortical Band Heterotopia, Tay-Sachs and Type 2 Gaucher's disease. To submit a child with a rare disease to the Ambassadors of Hope program, please visit the Vote4Hope website at

"The ongoing lack of treatments for thousands of rare diseases has created an immense burden on the U.S. healthcare system and leaves millions of children and their families in despair," added Boice. "At the Global Genes Project, our focus is on creating a unified voice and a platform for hope for this community, with continued efforts on educating the public and our government leaders on the importance of creating a national strategic plan for rare disease."

About The Global Genes Project

The Global Genes Project is a campaign of the Children's Rare Disease Network and is a grassroots effort with the goal to increase awareness about the prevalence and lack of treatments for rare diseases worldwide. The Children's Rare Disease Network is a registered 501c3 non-profit organization. For more information, visit or

About The Pepsi Refresh Project

The Pepsi Refresh Project is giving America the power to decide how to fund good ideas, big and small, that help refresh our world. In an effort to support those who generate innovative, optimistic ideas, the Pepsi Refresh Project, will award more than $20 million in 2010 to move communities forward. Each month, The Pepsi Refresh Project accepts 1,000 ideas and asks America to choose which ideas will win a Pepsi Refresh Grant.

SOURCE Children's Rare Disease Network; The Global Genes Project

More Stories By PR Newswire

Copyright © 2007 PR Newswire. All rights reserved. Republication or redistribution of PRNewswire content is expressly prohibited without the prior written consent of PRNewswire. PRNewswire shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

Latest Stories
The platform combines the strengths of Singtel's extensive, intelligent network capabilities with Microsoft's cloud expertise to create a unique solution that sets new standards for IoT applications," said Mr Diomedes Kastanis, Head of IoT at Singtel. "Our solution provides speed, transparency and flexibility, paving the way for a more pervasive use of IoT to accelerate enterprises' digitalisation efforts. AI-powered intelligent connectivity over Microsoft Azure will be the fastest connected pat...
Sold by Nutanix, Nutanix Mine with Veeam can be deployed in minutes and simplifies the full lifecycle of data backup operations, including on-going management, scaling and troubleshooting. The offering combines highly-efficient storage working in concert with Veeam Backup and Replication, helping customers achieve comprehensive data protection for all their workloads — virtual, physical and private cloud —to meet increasing business demands for uptime and productivity.
CloudEXPO has been the M&A capital for Cloud companies for more than a decade with memorable acquisition news stories which came out of CloudEXPO expo floor. DevOpsSUMMIT New York faculty member Greg Bledsoe shared his views on IBM's Red Hat acquisition live from NASDAQ floor. Acquisition news was announced during CloudEXPO New York which took place November 12-13, 2019 in New York City.
Blockchain has shifted from hype to reality across many industries including Financial Services, Supply Chain, Retail, Healthcare and Government. While traditional tech and crypto organizations are generally male dominated, women have embraced blockchain technology from its inception. This is no more evident than at companies where women occupy many of the blockchain roles and leadership positions. Join this panel to hear three women in blockchain share their experience and their POV on the futu...
"At the keynote this morning we spoke about the value proposition of Nutanix, of having a DevOps culture and a mindset, and the business outcomes of achieving agility and scale, which everybody here is trying to accomplish," noted Mark Lavi, DevOps Solution Architect at Nutanix, in this interview at @DevOpsSummit at 20th Cloud Expo, held June 6-8, 2017, at the Javits Center in New York City, NY.
BMC has unmatched experience in IT management, supporting 92 of the Forbes Global 100, and earning recognition as an ITSM Gartner Magic Quadrant Leader for five years running. Our solutions offer speed, agility, and efficiency to tackle business challenges in the areas of service management, automation, operations, and the mainframe.
As you know, enterprise IT conversation over the past year have often centered upon the open-source Kubernetes container orchestration system. In fact, Kubernetes has emerged as the key technology -- and even primary platform -- of cloud migrations for a wide variety of organizations. Kubernetes is critical to forward-looking enterprises that continue to push their IT infrastructures toward maximum functionality, scalability, and flexibility. As they do so, IT professionals are also embr...
Docker and Kubernetes are key elements of modern cloud native deployment automations. After building your microservices, common practice is to create docker images and create YAML files to automate the deployment with Docker and Kubernetes. Writing these YAMLs, Dockerfile descriptors are really painful and error prone.Ballerina is a new cloud-native programing language which understands the architecture around it - the compiler is environment aware of microservices directly deployable into infra...
Apptio fuels digital business transformation. Technology leaders use Apptio's machine learning to analyze and plan their technology spend so they can invest in products that increase the speed of business and deliver innovation. With Apptio, they translate raw costs, utilization, and billing data into business-centric views that help their organization optimize spending, plan strategically, and drive digital strategy that funds growth of the business. Technology leaders can gather instant recomm...
In an age of borderless networks, security for the cloud and security for the corporate network can no longer be separated. Security teams are now presented with the challenge of monitoring and controlling access to these cloud environments, at the same time that developers quickly spin up new cloud instances and executives push forwards new initiatives. The vulnerabilities created by migration to the cloud, such as misconfigurations and compromised credentials, require that security teams t...
Serverless Architecture is the new paradigm shift in cloud application development. It has potential to take the fundamental benefit of cloud platform leverage to another level. "Focus on your application code, not the infrastructure" All the leading cloud platform provide services to implement Serverless architecture : AWS Lambda, Azure Functions, Google Cloud Functions, IBM Openwhisk, Oracle Fn Project.
AI and machine learning disruption for Enterprises started happening in the areas such as IT operations management (ITOPs) and Cloud management and SaaS apps. In 2019 CIOs will see disruptive solutions for Cloud & Devops, AI/ML driven IT Ops and Cloud Ops. Customers want AI-driven multi-cloud operations for monitoring, detection, prevention of disruptions. Disruptions cause revenue loss, unhappy users, impacts brand reputation etc.
DevOps is often described as a combination of technology and culture. Without both, DevOps isn't complete. However, applying the culture to outdated technology is a recipe for disaster; as response times grow and connections between teams are delayed by technology, the culture will die. A Nutanix Enterprise Cloud has many benefits that provide the needed base for a true DevOps paradigm. In their Day 3 Keynote at 20th Cloud Expo, Chris Brown, a Solutions Marketing Manager at Nutanix, and Mark Lav...
Serverless Computing or Functions as a Service (FaaS) is gaining momentum. Amazon is fueling the innovation by expanding Lambda to edge devices and content distribution network. IBM, Microsoft, and Google have their own FaaS offerings in the public cloud. There are over half-a-dozen open source serverless projects that are getting the attention of developers.
As you know, enterprise IT conversation over the past year have often centered upon the open-source Kubernetes container orchestration system. In fact, Kubernetes has emerged as the key technology -- and even primary platform -- of cloud migrations for a wide variety of organizations. Kubernetes is critical to forward-looking enterprises that continue to push their IT infrastructures toward maximum functionality, scalability, and flexibility. As they do so, IT professionals are also embr...