Northridge Foundation for Neurological Research and Education

DAY ONE HIGHLIGHTS

Dear Viviane,   Today we kicked off the First Annual Meeting of the One Mind for Research Campaign! We welcomed more than 300 leaders in neuroscience, including partners and supporters from research institutions, government agencies, advocacy organizations and private sector companies. Beginning today, and in the next two days, we will accelerate our collaborative thinking and actions to realize the One Mind for Research vision and mission.   Our Vision: All mankind experiences a lifetime free of brain disease   Our Mission: For all mankind, One Mind, with Global Stakeholders, gathers resources, communicates priorities, and promotes a culture of sharing in order to eliminate stigma, transform policy and allocate resources that enable and accelerate basic research, translational science, and care delivery by creating multi-disciplinary teams that transform both our understanding and treatment of brain diseases within 10 years.   Finding cures and treatments for brain diseases for the people we love. This was the rallying cry as the meeting opened today. Co-founders Garen Staglin and Patrick Kennedy were joined by CEO Gen. (ret.) Peter Chiarelli, Gene Block, and Dan Geschwind to welcome everyone to the UCLA campus and acknowledge the spectacular advancements in science that would further propel the trajectory in support of a bold vision and worthwhile mission.   Achieving Faster Cures for Brain Disorders – Michael Milken shared his thoughts on what it will take for everyone involved with One Mind to succeed together – venture-research approach, innovative science, annual scientific retreat, expanded collaboration and funding.   Scale and Scope of the Scientific Challenge – Steve Hyman highlighted three ways to improve brain research and outcomes: supporting basic science and seeking opportunities for translation, combating intellectual property silos and, repairing the ecosystem for treatment development through public/private partnerships.   Role of the FDA in Large-Scale Data Mining – Eric Perakslis offered his perspective on the importance and interest in creating and funding technology and sharing it more broadly for the greater benefit of patients.   Stem Cells: Regenerating Mind – Fred Gage led an amazing panel discussion with Leslie Thompson, Arnold Kriegstein, Tom Carmichael and Peter Coffey. The scientists spoke about the development of therapies for diseases in Huntington's Disease, epilepsy, Parkinson's Disease, neuropathic pain and age-related macular degeneration using stem cells.   Please visit our Facebook page at www.facebook.com/1mind4research for additional coverage and information on the topics discussed today. We look forward to sharing more exciting news from the Annual Meeting in the next two days.   Regards,   One Mind for Research Communications Team   To contribute to One Mind for Research, visit our Web site: www.1mind4research.org.

 

This message was sent to valleyapda@yahoo.com from: One Mind for Research | Building G, 4000 41st Street NE | Seattle, WA 98105, USA

Tuesday, May 22 from 3 - 4:30p @Leeza's Place in Sherman Oaks

Space is limited; RSVP required to valleyapda@yahoo.com

A representative from the Center for Health Care Rights will discuss Medicare benefits, co-payments, deductibles, and recent changes. Bring your questions.

This meeting is open to the general public and people with Parkinson's, their family members and caregivers. The meeting is hosted by Leeza's Place and the American Parkinson Disease Association (APDA) Regional Information & Referral Center.

 

 

By Ian Duncan, Los Angeles Times

May 10, 2012

An experimental treatment for multiple sclerosis has caused death, strokes, nerve damage and abdominal bleeding and has no proven benefits for sufferers of the disease, the Food and Drug Administration warned Thursday.

Known as liberation therapy, the treatment targets chronic cerebrospinal venous insufficiency — or CCSVI — a narrowing of the veins in the head and neck. It involves inserting balloons or stents into veins to widen them in an attempt to relieve the symptoms of MS.

The FDA received reports in 2011 of a patient who died from bleeding in the brain after undergoing the treatment and another who was left permanently paralyzed by a stroke. Those incidents prompted the formal warning.

To read the story http://www.latimes.com/health/la-na-fda-ms-20120511,0,2802749.story

Meeting: 1 PM on Wed, May 23 at ILCSC in Van Nuys

14141 Haynes Street (rear meeting room), Van Nuys, CA 91401

Anyone who has concerns or suggestions to increase the efficiency of the paratransit system is encouraged to attend the meeting. For information contact Rodrigo at the Independent Living Center of Southern California at 818.785.6934 or email rflores@ilcsc.org

On Feb 17 our intern Renabette San Antonio attended a meeting to evaluate the efficiency and usability of the paratransit system. Most of the attendees of the meeting were Access riders who presented suggestions on how to make the transportation services better and more efficient.

The top three issues mentioned were:
1. It should be known to the drivers/transportation system what passengers they are accomodating -i.e. whether they have oversized wheelchairs, service dogs, etc
2. Negotiated pick up time
3. Significant shareholders process

Some of the personal testimonies included:
- not being able to go somewhere on a whim because they no longer have same day call-in service; people must call at least 24 hours before
- because of GPS errors, sometimes the driver can be three houses away and considered a "no show" because they are not picked up at the exact address agreed upon
- people are being charged extra fees for using their VISA tap card

The Greater Los Angeles Chapter of the American Parkinson Disease Association (APDA) is announcing its next wellness workshop:

Update: Santa Clarita group is not meeting anymore. For information pls contact Joan Osborne at 661-533-9011

 

Feel free to share this information with anyone who can benefit. If you have not already done so, please “follow” us on by clicking on "follow" in the right hand upper corner to receive email updates from posterous (host site) or subscribe via RSS (link on the bottom of the page).

 

I will try to continue emailing information to my contact list as time and resources permit. Unfortunately, Yahoo does not look kindly on mass mailing and it is taking more and more time to get around their restrictions.

When: Friday mornings 9-10 AM (usually followed by a 30 minute walk)

Where: Westminster Presbyterian Church

32111 Watergate Rd.

Westlake Village, Ca. 91361

LEADER: Richard Grenn at 805-230-2462 (no calls after 7 PM please)

Cost: No charge; space is limited and registration is required

The American Academy of Neurology Foundation is now the American Brain Foundation. The name change is part of an overall re-branding campaign as the organization repositions itself to become the world's leader in raising money for research to cure brain diseases, such as Alzheimer's disease, stroke, Parkinson's disease, autism, and epilepsy. The re-branding announcement was made at the American Academy of Neurology's 64th Annual Meeting in New Orleans.

The American Brain Foundation, the foundation of the American Academy of Neurology, supports vital research & education to discover causes, improved treatments, and cures for brain and other nervous system diseases. Learn more at http://www.CureBrainDisease.org.

The American Academy of Neurology, an association of more than 25,000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer's disease, stroke, migraine, multiple sclerosis, brain injury, Parkinson's disease and epilepsy.

For more information about the American Academy of Neurology, visit http://www.aan.com

Dr. Ronald B. Ziman, medical director of the American Parkinson Disease Association (APDA) Regional Information & Referral Center at the Center for Aging Research & Education (CARE), and Viviane Tondeur, MBA, Gerontologist were the guests of Myles McNamara and the Aging with Power radio show to talk about Parkinson's disease.

Listen to the program here or click on

Dr. Ziman gave an overview of Parkinson's disease symptoms, treatments, therapies and how a neurologist goes about diagnosing PD. Viviane talked about the programs offered through the APDA Regional Information & Referral Center and announced the new Santa Clarita Parkinson Support Group and the annual fundraiser for PD research, the Parkinson's Beach Brigade.

Join the CARE team for the Parkinson's Beach Brigade and show you CARE too! http://apdaparkinson.donordrive.com/index.cfm?fuseaction=donordrive.team&eventID=587&teamID=5462

Click on the support group links at the bottom of this page arranged by geographical area and special interest.

 

We had a great turnout for the introductory class in March and will be offering the class every 3rd Wednesday of the month.