Join Us In Observing Rare Disease Day On Feb. 28, 2010!
To raise awareness of rare diseases and the need for safe, effective treatments, people around the world will join together to observe the 2nd Annual Rare Disease Day on the last day of February (Feb. 28, 2009). NORD is coordinating this project in the U.S., and is inviting all patient organizations, caregivers, researchers, and companies developing orphan products to join in this observance. The purpose is to focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments.
The 1st Rare Disease Day was organized in Europe last year by EURORDIS, the European Rare Disease Organization. It was very successful, with many political leaders and members of royal families helping to draw attention to the activities. This year is the first time for Rare Disease Day to be observed in the U.S. The hope is that this will become an annual global event on the last day of February.
Add this badge of support to an email, your website, Facebook page, or any other social network on which you wish to show your participation in Rare Disease Day 2010. Click on the badge to embed the code. Visit the new US website.
2009 NMO Patient Session
Thank you to Attendees
On Nov. 11, 2009, The Guthy-Jackson Charitable Foundation hosted the first-ever Patient Session dedicated solely to those affected by Neuromyelitis Optica (NMO) Spectrum Disease. Attendees travelled across the world to gather in Los Angeles, CA, to attend the NMO Patient Session. Attendees also participated in the Patient Session via webcast. Below is a letter to them from the Foundation Founder, Ms. Victoria Jackson.
Dear Friends,
I wanted to thank everyone for participating in the first-ever Patient Day of our yearly Symposium for NMO. Your presence -- your stories, courage, and strength of will -- profoundly touched all of us at The Guthy-Jackson Charitable Foundation. We honored our daughter's vision to bring patients together and you made it happen. It was a real meeting of minds and hearts... I know the "medical" side of the room never experienced anything quite like it.
That day changed everyone.
Here's just one example: on the Wednesday the Symposium ended, a press release reported that the Mayo Clinic believed that thousands of NMO patients have potentially been misdiagnosed with MS as a result of a lack of awareness of NMO within the medical community.
My husband and I are grateful to all the doctors and scientists who’ve made this battle personal—and to those of you who live with NMO, and took that leap of faith to come to Los Angeles from your faraway homes to join the new NMO community. I'm also grateful to those who couldn't be here but were with us in spirit, and to so many of you who took part through the Internet. I'm grateful to all our fellow warriors. It was amazing to watch everyone come together in one room to face this disease.
I will remember that day in my heart forever. It made our mission that much more critical.
You are no longer alone. Together, we will move together as a community -- a family -- to find a cure.
We're unstoppable.
With Love,
Victoria Jackson, Founder
A SPECIAL THANKS TO OUR FRIENDS AT THE ANNENBERG FOUNDATION FOR THEIR GENEROUS DONATION IN SUPPORT OF THIS CONFERENCE.
2009 NMO Roundtable Conference
The Guthy-Jackson Charitable Foundation
NMO Roundtable Conference 2009
In search for a cure for Neuromyelitis Optica (NMO) Spectrum Disease, experts in NMO clinical care and research came together to continue scientific collaboration at The Guthy-Jackson Charitable Foundation’s second annual NMO Roundtable Conference at The Tower Beverly Hills in Los Angeles, CA, on Nov. 9 - 11.
For two days leading NMO researchers and clinicians intensely discussed scientific approaches, results, treatments, practices and future NMO scientific discovery in an attempt to ultimately find a cure for NMO.
The third day of the Roundtable Conference introduced a new aspect to this ground-breaking approach to scientific discovery by inviting members of the public to attend a NMO Patient Session, called Living with NMO.
The NMO Patient Session targeted those whose lives have been affected by NMO and allowed them to participate in a panel discussion with select NMO researchers and clinicians on a level never experienced by many participants.
The NMO Roundtable Conference welcomed researchers and clinicians and personnel from:
- Accelerated Cure Project
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Johns Hopkins School of Medicine
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Mayo Clinic
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National Institute of Neuroscience
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Oxford University
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St. George’s University of London
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The Scripps Research Institute
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Stanford University
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Tohoku University School of Medicine
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Transverse Myelitis Association
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University of California, San Francisco
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University of Texas Southwestern Medical Center
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Walton Centre
The Guthy-Jackson Charitable Foundation
NMO Fall Roundtable Conference 2008
For the first time in history, a conference solely dedicated to scientific collaboration for Neuromyelitis Optica (NMO) Spectrum Disease was hosted by The Guthy-Jackson Charitable Foundation on Nov. 17 - 18, 2008.
Researchers and clinicians from international institutions and from across United States gathered in Los Angeles, CA, to attend the NMO Fall Roundtable Conference.
Scientific and clinical experts who have specific knowledge and experience relevant to NMO were brought together in an informal forum to discuss and collaborate on NMO research. During the meeting, attendees addressed the current status of scientific research and clinical approaches for NMO. Researchers presented their current projects and ideas to their peers, and discussed how best to further the study of NMO research in an effort to initiate multi-institutional collaboration to advance the scientific knowledge of and work toward a potential cure for NMO.
Institutions represented at the roundtable were Johns Hopkins School of Medicine, The Mayo Clinic, The Scripps Research Institute (TSRI), Stanford University, The University of California, Los Angeles (UCLA), The University of California, San Francisco (UCSF), The University of Texas (UT Southwestern), The Accelerated Cure Project (ACP) and The Transverse Myelitis Association (TMA).
The Guthy-Jackson Charitable Foundation would like to thank all of the NMO Fall Roundtable Conference attendees for their valued contribution to this historic benchmark in medical history and looks forward to advancing the collaboration of scientific research in NMO.
NMO Research
