All Journal Entries Journals
Sort By:  

Can you help us innovate medical research? Play Breakthroughs to Cures a unique online idea-generating game.

Sep 08, 2010 - 2 comments
Tags:

games

,

idea

,

play

,

medical research

,

Research

,

Help us



On October 7, 2010, the Myelin Repair Foundation is hosting the first of its kind online game “Breakthroughs to Cures” This is an experimental project to promote broad and deep conversations among a cross section of people committed to finding ways to make new medicines better and faster.

Breakthroughs to Cures is an online idea-generating game designed to garner new ideas for how we can change the medical research system to develop treatments and cures for patients faster.

Over a 24-hour period, players will be sharing ideas and collaborating to build better ideas to help this panel uncover the best ways to change the current system of medical research and drug development.

The game is funded by the Robert Wood Johnson Foundation's Pioneer Portfolio. Their foundation believes that unconventional thinking is necessary to create radical change in health care in order to accelerate the speed at which treatments are delivered.

I'm reaching out to you because we want the voices of patients to be involved -- we want to bring a greater sense of urgency and importance to this event.

Breakthroughs to Cures is NOT a conference that requires travel and time away from the office. It is a real-time, online event that allows participants to share their ideas with others in a game-style format. Because you can log on and off at your convenience, you can weigh in for a few minutes any time, over the course of a 24-hour period, with your best ideas or you can watch as your and others' ideas are expanded on and refined by the entire community of participants.
Why a game?

Every day millions of online gamers bring their real world experiences into fictional settings and accomplish great things. Why not engage the power of an online game to solve a real world problem? Breakthroughs to Cures is an experiment designed to test this hypothesis.

We chose the format because it allows us to draw on the expertise of many busy scientists, industry experts, patients, policy makers, and other big thinkers inside and outside of the medical research enterprise and health care industry.



We believe you, and others like you, are the best source for identifying and refining the most innovative and replicable ways to accelerate the development of new medicines for millions living with unmet medical needs.

A summary of the best ideas gleaned from the forum will be publicly available.

Please join us on October 7 beginning at 9:00 A.M. (PT) for this unique 24-hour game.

When? Thu, October 7, 9am – Fri, October 8, 9am GMT-07:00

Where? http://breakthroughstocures.org

Learn more and register at Breakthroughs to Cures.




Scott Johnson Named Finalist in Ernst & Young Entrepreneur of the Year Award

May 13, 2010 - 0 comments
Tags:

myelin repair foundation

,

scott johnson

,

ernst and young



Scott Johnson Named Finalist in Ernst & Young Entrepreneur of the Year Award

MAY 12, 2010 -- The Northern California Chapter of the Ernst & Young Entrepreneur Of The Year® award  announced 25 finalists in its 2010 award program. This recognition is given to entrepreneurs who demonstrate extraordinary success in the areas of innovation, financial performance and personal commitment to their businesses and communities. Scott Johnson, founder and president of the Myelin Repair Foundation, is one of only two finalists among the 25 representing the non-profit sector.

See Ernst & Young News announcement.http://bit.ly/cdK6ex

The Myelin Repair Foundation's Views on CCSVI and MS

Dec 04, 2009 - 0 comments
Tags:

ccsvi

,

Buffalo Neuroimaging Analysis

,

Chronic cerebrospinal venous i

,

Dr. Paolo Zamboni



Original Blog:http://myelinrepair.org/blog/?p=1454

The Myelin Repair Foundation shares your optimism surrounding recent observations of malformations in cerebrospinal veins associated with blood flow defects in MS patients. Much of the research has been published by Dr. Paolo Zamboni and colleagues at the Centre for Vascular Diseases, University of Ferrara. Dr. Zamboni and several other researchers involved in Chronic cerebrospinal venous insufficiency (CCSVI) research also serve on the Scientific Committee of the Fondazione Hilarescere whose website contains additional information about the research.

The most recent research article is published in the Journal of Neurology, Neurosurgery and Psychiatry. Based on high-resolution sonographic imaging techniques, this publication and earlier articles describe several categories of defects observed in MS patients as compared to control groups, including changes in the direction and velocity of cerebral blood outflow, narrowing of the internal jugular vein (stenosis), and malformations of the internal jugular and azygous veins. Intriguingly, the authors claim that the observed patterns of CCSVI may differentiate (Primary-Progressive) PPMS from (Relapsing-Remitting) RRMS and (Secondary-Progressive) SPMS disease courses.

Despite the recent excitement, caution should be exercised in interpreting these relatively early observations, particularly as they relate to clinical trials. Continued, large-scale diagnostic research studies are needed to confirm these initial findings, such as the trial underway at the Buffalo Neuroimaging Analysis Center. Most importantly, there is as yet no published evidence that correcting CCSVI will have long-term benefits for MS patients. We at the Myelin Repair Foundation will be interested in learning whether the potential interventions described in these articles will result in an improved myelination status with long-term positive impacts on clinical signs and symptoms.

Most encouraging is the active engagement of an MS patient community that is dedicated to learning about the research. Several websites have been created to distribute information to the MS patient community, including the patient-motivated “Venous Multiple Sclerosis CCSVI” website and the “CCSVI in Multiple Sclerosis” social network on Facebook. Extensive information and discussion forums can be found on these websites.

Rusty Bromley
COO, The Myelin  Repair Foundation


Submit a Patient Card for the BIL-PIL Conference

Sep 28, 2009 - 0 comments
Tags:

BIL PIL

,

conference

,

patient card



MRF President Scott Johnson will be speaking at the BIL/PIL 2009 Conference in San Diego, CA at the end of October.

BIL/PIL focuses on big ideas everywhere along the healthcare continuum: from medical research to preventative medicine, to patient care, patient records and more.

The MRF wants to contribute more to  BIL/PIL than Scott’s talk on how the MRF is accelerating medical research and the delivery of patient treatments. We want to remind the BIL/PIL conference attendees that the new ideas they are exploring in health and health care, in the end, will matter more to patients than anyone else. Especially those living with chronic diseases for which there are few, if any, effective treatments or cures.

So we had an idea. We want to create and handout P-Cards — Patient Cards — one card to each attendee that shows information about an individual person: his or her medical conditions, symptoms,  medications or treatments (if there are any) and a photo. We hope these cards will motivate attendees to share their most thoughtful ideas for how together we can promote innovation in health and health care.

But we can’t make P-cards without your help!  Send us your suggestions of who should be on a P-card – it can be you or someone you know (with their permission).  We are aiming to create 300 of these P-cards by BIL/PIL’s launch at the end of October.

Submit your information via the Google Form (http://spreadsheets.google.com/viewform?hl=en&formkey=dFg0T092bGtYOTZkenBVd3E4MmlLN1E6MA ). Then email your photo to us at ***@****. We will use your info to create a customized P-Card with your information and put your card in the hands of someone at BIL/PIL.

Thanks for your ideas!