NEW MS drug treatment Ocrevus approved from FDA

This information is from: NBC NEWS http://www.nbcnews.com

The Food and Drug Administration approved a new drug to treat multiple sclerosis Tuesday, March 28,2017

The drug, called Ocrevus, is approved for use against the most common form of MS – the relapsing-remitting type. It’s also the first drug specifically approved for primary progressive MS, a very aggressive form of the disease that affects 10 to 15 percent of MS patients.

There are no approved treatments now for primary progressive MS, which causes steadily worsening symptoms.

YOU CAN ALSO GO TO: MS News Update: FDA Approves First Drug to Treat Two Forms of MS – Please see MSAA’s online news article for more information. CLICK: mymsaa.org/news/fda-approves-ocrevus

While it’s not a cure, it’s one more weapon to use to help some of the 400,000 people with MS. In trials of 1,600 volunteers, it cut relapses in patients with the most common form of MS by nearly half compared with an older drug called Rebif.

Ocrevus, known generically as ocrelizumab, is a monoclonal antibody – an engineered immune system molecule. It won breakthrough designation from the FDA, which helped speed it through the approval process. Roche, which makes the drug, expects sales to top $4 billion a year.

It will be on the market within two weeks, and will cost $65,000 a year, the company said. That’s similar to the cost of Rebif, a 14-year-old drug now widely used to treat MS, although costs vary widely on all MS drugs.

Genentech says it deliberately set the price 20 percent below the current market average for an MS treatment. “The continually escalating prices of MS disease-modifying therapies are creating barriers to people with MS getting these life-changing medications,” the National MS Society said in a statement.

“Given every six months by IV infusion, Ocrevus represents a scientific advancement as a first-in-class therapy targeting B cells, a type of immune cell that plays a central role in the disease,” Genentech, a subsidiary of drug giant Roche, said in a statement.

[Read more…]

PAN and MSAA Support MS patients

Patient Access Network (PAN) Foundation and MSAA Launch Alliance to Support People Living with MS

The Patient Access Network (PAN) Foundation and Multiple Sclerosis Association of America (MSAA) today announced they are launching a new alliance to offer a broad range of support for people living with multiple sclerosis (MS). Working together, the PAN Foundation and MSAA will ensure that people living with multiple sclerosis have access to both financial and patient support services, providing them with the holistic support needed to best manage their disease.

“While our work at PAN centers on alleviating the financial hardship for patients and families who face diseases like multiple sclerosis, we recognize that financial assistance is only one piece of the puzzle,” said PAN President and CEO Dan Klein. “In partnering with MSAA, we can connect patients to additional services and resources, including educational programs, safety and mobility equipment, cooling products, MRI funding, and technology and tools that can help them achieve healthier outcomes.”

According to MSAA, multiple sclerosis is a disease of the central nervous system, which consists of the brain, optic nerves and spinal cord. MS damages or destroys the protective covering surrounding the nerves of the central nervous system and can potentially injure the nerves themselves. This damage causes reduced communication between the brain and nerve pathways. An estimated 2.5 million people worldwide are living with MS.

“We are excited that our new alliance with PAN will allow MSAA to expand the services we provide to more people living with MS,” said MSAA President and CEO Gina Ross Murdoch. “An MS diagnosis can be overwhelming not only for the individuals who are diagnosed, but also for their loved ones. Our partnership with PAN will mitigate some of the financial pressures so that patients can focus on how to best manage their disease.”

Patients who qualify for the PAN Foundation’s multiple sclerosis program are eligible to receive up to $8,000 per year in financial assistance. Eligible patients must be getting treatment for MS; must reside and receive treatment in the United States; must have Medicare health insurance; and the medication for which they seek assistance must be covered by Medicare and must treat the disease directly. In addition, patients must fall at or below 500 percent of the Federal Poverty Level.

Patients, or advocates and caregivers applying on their behalf, can apply for assistance using the PAN Foundation’s online patient portal (www.panapply.org), or by calling 1-866-316-7263, 9 a.m. to 5 p.m. Eastern Time, Monday through Friday. To learn more about PAN’s more than 50 disease-specific programs, visit panfoundation.org.

About the PAN Foundation

The PAN Foundation is an independent, nationwide 501(c)3 organization dedicated to providing help and hope to underinsured patients who are unable to afford the out-of-pocket expenses for their prescribed medications. Since 2004, PAN has provided over $2.5 billion in financial assistance to more than 700,000 patients who would otherwise be unable to afford their medications. To learn more, visit panfoundation.org.

About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including MSAA’s magazine, The Motivator; MSAA’s nationally recognized website (at mymsaa.org), featuring award-winning educational videos and research updatesS.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™ (named one of the best multiple sclerosis iPhone & Android apps by Healthline.com); a resource database, My MS Resource Locator®; safety and mobility equipment distributioncooling accessories for heat-sensitive individuals; educational programs held across the country; MRI fundingMy MSAA Community, a peer-to-peer online support forum; a clinical trial search tool; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

 

MS Clinical Trial Information

Clinical Trials Word Cloud

CURRENT MS CLINIAL TRIALS IN THE LOS ANGELES AREA

CLICK ON THE GREEN LINK TO TAKE YOU DIRECTLY TO THE CLINICAL TRIAL INFORMATION!

Closest site: Less than 5 miles away

Status: Enrolling participants

Trial type: Interventional (Drug)The purpose of this study is to demonstrate the superiority of MD1003 over placebo in the disability of patients suffering from progressive… Read more

Closest site: USC Norris Comprehensive Cancer Center

Status: Enrolling participants

Trial type: Interventional (Drug)The purpose of this study is to provide confirmatory evidence of the safety and efficacy of two Dysport® (AbobotulinumtoxinA) doses (600 units… Read more

Closest site: CEDAR SINAI

Status: Not yet enrolling participants

Trial type: Interventional (Behavioral)This is an international, multicenter, randomized controlled trial of an internet-based CBT intervention for depression (Deprexis) conducted in… Read more

Closest site:  BURBANK

Status: Enrolling participants

Trial type: Observational (Drug)The purpose of this world-wide prospective parallel-cohort study in patients with relapsing forms of MS, either newly treated with fingolimod or… Read more

Looking for more options

New trials are being added all the time. Leave your email address and we will keep you updated as more options become available.   GO TO: https://antidote.me/match/study-page . If you click the colored word  STUDY – it will take you directly to the Antidote website where you can sign up for emails.

 

MSAA hosts “Ask me Anything” on March 29

MSAA Hosts “Ask Me Anything” During
MS Awareness Month  Do you have any questions about multiple sclerosis that you have been meaning to ask?  Here is your chance!  March 29, 2017 at 6:00 PM for an Ask Me Anything session with MS Expert, Dr. Barry Singer, on My MSAA Community.  ( just click on the colored link   to take you directly to our website)For one hour, Dr. Singer will answer your questions about MS posted in adesignated conversation thread on the Community.
WHAT: MS Awareness Month “Ask Me Anything” (AMA)
WHO: MSAA and Dr. Barry Singer, Director of The MS Center for Innovations in Care in St. Louis, MO
WHEN: Wednesday, March 29th, 6:00 – 7:00 PM EST
WHERE: My MSAA Community on HealthUnlocked
 

If you would like to ask a question during the Ask Me Anything session,                                                                  you will need to have or create a profile on My MSAA Community,                                                                    our peer-to-peer online community in which you can share your MS  journey, connect with others, and contribute to ongoing conversations – all from your phone, tablet, or computer.

 

Join Music Mends Minds Jazz Band in Studio City

 

Come join us back in Studio City! Everyone invited!

contact: (818) 326-0500
Keep scrolling for all the information!!
 

The NeuroCommunity Foundation is here for you:

For information about Parkinson’s disease and other movement disorders, support groups, wellness programs, education events, and local resources in northern Los Angeles County, Ventura County, Central Coast & Central Valley, contact us here or call 818-745-5051 to speak with Jan D. Somers, Education Director, Parkinson & Movement Disorder Information Center, The NeuroCommunity Foundation.

The NeuroCommunity Foundation is a non-profit foundation. We provide support groups, educational conferences, resources, research updates/ clinical trials information and PD events in the SFV/Ventura/Central Coast/ Inland Empire.

As we rely on donations to continue providing these services at no charge, if you would like to support our efforts, you can donate with ease and security at our website or mail us your gift. Please make sure and note our website as a bookmark in your computer. It is:  www.neurocommunity.org 

The NeuroCommunity Foundation is exempt from Federal income tax under section 501(c)(3) of the Internal Revenue Code. Donors may deduct contributions to the foundation as provided in section 170 of the Internal Revenue Code.

 

 

MSAA MRI access fund is fully reinstated

NEWS from MSAA MRI : Access Fund is Now Fully Reinstated

As a result of recent funding approvals, MSAA is thrilled to announce we have reinstated a critical coverage component to our popular MRI Access Fund. Individuals with Medicare and private health insurance who cannot meet their co-insurance balance are now eligible to apply for funding assistance for a cranial magnetic resonance imaging (MRI) exam through the program.

The MSAA MRI Access Fund assists individuals who are uninsured or under insured acquire a cranial MRI to help determine a diagnosis of multiple sclerosis or evaluate current MS disease progression.

The MRI Access Fund helps qualified applicants in two ways:  For people with no health insurance or a high unmet insurance deductible, the Fund will pay for an MRI through one of MSAA’s contracted imaging centers 

For individuals who cannot meet their MRI co-insurance balance, the program will cover the remaining cost, up to a specified maximum amount

Applicants must meet certain eligibility guidelines, complete the updated 2017 application and have not received an MSAA-funded MRI within the past 24 months. Also, MSAA does not reimburse for MRIs outside of this program. To learn more and apply, please visit the MRI Access Fund or call (800) 532-7667, ext. 120.

The NeuroCommunity Foundation is here for you:

For information about Parkinson’s disease and other movement disorders, support groups, wellness programs, education events, and local resources in northern Los Angeles County, Ventura County, Central Coast & Central Valley, contact us here or call 818-745-5051 to speak with Jan D. Somers, Education Director, Parkinson & Movement Disorder Information Center, The NeuroCommunity Foundation.

The NeuroCommunity Foundation is a non-profit foundation. We provide support groups, educational conferences, resources, research updates/ clinical trials information and PD events in the SFV/Ventura/Central Coast/ Inland Empire.

 As we rely on donations to continue providing these services at no charge, if you would like to support our efforts, you can donate with ease and security at our website or mail us your gift. Please make sure and note our website as a bookmark in your computer. It is:  www.neurocommunity.org 

The NeuroCommunity Foundation is exempt from Federal income tax under section 501(c)(3) of the Internal Revenue Code. Donors may deduct contributions to the foundation as provided in section 170 of the Internal Revenue Code.

 

 

 

 

 

 

 

 

 

 

 

New hope for treament of MS

New hope for treatments of MS

 The passage of the 21st Century Cures Act will accelerate the discovery, development and delivery of life-changing treatments and improve the day-to-day lives of people with multiple sclerosis,” said Cyndi Zagieboylo, President and CEO of the National MS Society.

The bill includes a number of the MS movement’s top priorities:

  • Establishment of a data collection system to track the incidence and prevalence of neurological conditions, otherwise known as the Neuro Data bill;
  • $4.8 billion in new funding for the National Institutes of Health and $500 million for the Food and Drug Administration to bring new treatments to patients;
  • A six-month extension protecting access to power complex rehabilitation technology (CRT) wheelchair accessories, which are fundamental components of the chair such as tilt-and-recline systems and specialized seat cushions.

“I applaud Congress for creating a pathway for promising innovation through the establishment of a data collection system for neurological diseases; providing new funding for the NIH and the FDA; protecting access to CRT wheelchair accessories and more. This groundbreaking legislation truly brings us one step closer to ending MS,” said Zagieboylo.
“This will be a game-changer,” said MS District Activist Leader Frank Austin of Pennsylvania. Austin was diagnosed with MS in 1999 and was deeply involved in the passage of the bill. “I’ll continue to advocate over the next few years so the funding is appropriated and the bill is effectively implemented.”

Learn more:

The NeuroCommunity Foundation is here for you:

For information about Parkinson’s disease and other movement disorders, support groups, wellness programs, education events, and local resources in northern Los Angeles county, Ventura county, Central Coast & Central Valley, contact us here or call 818-745-5051 to speak with Jan D. Somers, Education Director, Parkinson & Movement Disorder Information Center, The NeuroCommunity Foundation.

The NeuroCommunity Foundation is a non-profit foundation. We provide support groups, educational conferences, resources, research updates/ clinical trials information and PD events in the SFV/Ventura/Central Coast/ Inland Empire.

As we rely on donations to continue providing these services at no charge, if you would like to support our efforts, you can donate with ease and security at our website or mail us your gift. Please make sure and note our website as a bookmark in your computer. It is:  www.neurocommunity.org

The NeuroCommunity Foundation is exempt from Federal income tax under section 501(c)(3) of the Internal Revenue Code. Donors may deduct contributions to the foundation as provided in section 170 of the Internal Revenue Code.

 

 

 

 

 

 

Living with Multiple Sclerosis will weed people out of your life

living-well 

Living with Multiple Sclerosis will weed people out of your life

by Penelope Conway

One thing Multiple Sclerosis has done for me is weed out the people in my life that were only there for the ride, not the journey. So many times people proudly boast about the great numbers of people they know and pat themselves on the back because they have a sea of people surrounding them, but are those people really friends? I can almost guarantee you that a majority of them are what I would consider fair-weather friends.

I’ve noticed that people seem to be great at hanging around when they are getting some type of reward or kick-back for being your friend. You know, the free food, tickets, perks, support that you are able to send their way. But when those things dry up and you become the one in need of their continued help, they suddenly have other things more important to do.

Life has taught me a few things—I guess you could say the hard way—about people. I have learned what true friendship is…and is not.

A friend is not…

  • the long list of people in your High School year book.
  • the person who friended you on Facebook, followed you on Twitter or added you on Instagram.
  • someone who attended your birthday party, lives in the house next door or says hello to you in passing at the office.
  • the person who gives you a piece of gum or hangs out with you at the mall.
  • someone who waves at you from across the room, bags your groceries or invites you to their wedding.

[Read more…]

Sleep in MS: Strategies for Improving your Zzz’s

photo of research for website.xps

UPCOMING WEBINAR & TEL-LEARNING PROGRAM

Reserve your spot: Tuesday, December 13, 2016

Topic: Sleep in MS: Strategies for Improving your Zzz’s
 
Each month the webinar & telelearning program will relate to the MS educational article in Can Do MS’s monthly e-newsletter. Subscribe to Can Do MS’s email updates.

Presenters
The webinar & tele-learning presenters are part of Can Do MS’s family of programs consultants, an interdisciplinary network of more than 70 health care professionals from around the U.S. and Canada, including exercise physiologists, nutritionists, neurologists, physical and occupational therapists, physicians, psychologists, speech/language pathologists, registered nurses and other health care specialists.

ms-sleep-registration

Here is the place to register: http://www.mscando.org/multiple-sclerosis-programs/webinar-series/register/

Questions?
Anne Gilbert, Director of Programs
800-367-3101 ext. 1281 / 970-926-1281 / agilbert@mscando.org

For additional webinars, videos and Webcasts, by Multiple Sclerosis Information (MSi) go to http://mymsaa.org/ms-information/videos ( just click the colored link to go to the website directly.)

[Read more…]

Music Mends Minds Studio City and VA West LA Campus

NOW IN STUDIO CITY

MusicMendsMinds

WHEN:  Tuesdays 1:00-2:30pm

Music Mends Mind has started a Studio City program.   MUSIC MENDS MINDS builds musical support groups in an effort to use music as “medicine for the mind,” while creating social support networks crucial to our members’ well-being and providing a joyful outcome for patients, their families and their caregiver.

MUSIC MENDS MINDS’ STUDIO CITY JAZZ BAND
Looking for musicians, singers and volunteers
Are you living with early cognitive decline, Alzheimer’s, Parkinson’s,dementia, traumatic brain injury or stroke?

Come make music with us! Friends, family, caregivers welcome, too.

The Unitarian Universalist
Church of Studio City
12355 Moorpark Street
Tuesdays 1:00-2:30pm
Free street parking

ALSO: Music mends minds will also have a new program FOR VETERANS  in West LA . Click on colored link below  for information. Music Mends Minds at VA in West LA  Campus 

LEARN MORE AT www.musicmendsminds.org
Band info: Katherine 818-642-8771 or Marie 818-512-7056
Non- Profit 501(c)(3)
The 5th Dementia Band

The NeuroCommunity Foundation is here for you

For information about Parkinson’s disease and other movement disorders, support groups, wellness programs, education events, and local resources in northern Los Angeles county, Ventura county, Central Coast & Central Valley, contact us here or call 818-885-8623 to speak with Jan D. Somers, Education Director, Parkinson & Movement Disorder Information Center, The NeuroCommunity Foundation.

As a non-profit foundation, we provide support groups, educational conferences, resources, research updates/ clinical trials information and PD events in the SFV/Ventura/Central Coast/ Inland Empire.

 As we rely on donations to continue providing these services at no charge, if you would like to support our efforts, you can donate with ease and security at our website or mail us your gift. Our website is:  www.neurocommunity.org

 The NeuroCommunity Foundation is exempt from Federal income tax under section 501(c)(3) of the Internal Revenue Code. Donors may deduct contributions to the foundation as provided in section 170 of the Internal Revenue Code.

 

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Shop with AmazonSmile and Support The NeuroCommunity Foundation

Did you know that you can support The NeuroCommunity Foundation through your everyday online purchases? Amazon.com has a charitable program called AmazonSmile. It is a simple and automatic way for you to support The NeuroCommunity Foundation every time you shop, at no cost to you.

When you shop at AmazonSmile, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that the AmazonSmile Foundation will donate 0.5% of the purchase price to The NeuroCommunity Foundation!

It’s simple:

1) Go to AmazonSmile from the web browser on your computer or mobile device.
2)Login with your amazon.com username and password or create one if you are a new user.
3) Search for The NeuroCommunity Foundation in the search box on the right side where it asks which charity you would like to support.
4) Select The NeuroCommunity Foundation from the search results or type in The NeuroCommunity Foundation should the select not include our organization.
Happy shopping and thank you for supporting The NeuroCommunity Foundation

Support us when you shop for back-to-school items.

Just Click Here and Shop

Northridge Foundation For Neurological Research & Education

Smile with Back to School shopping

Dear The NeuroCommunity Foundation friends,supporters and participants.

If you happen to shop at Ralphs and would like to support The NeuroCommunity Foundation, we would be most appreciative!. If you do shop at Ralphs, we will receive 1 % of your purchase through their community
contribution program. The NeuroCommunity Foundation's Non-Profit Org. number ( NP0 # ) is 82287

All you need to do is enroll online at www.ralphs.com OR by calling Ralphs at
800-443-4438 after September 1, 2016.

If you happened to enroll prior to Sept 1st, Ralphs requires you to register again.

For your convenience, step-by-step website registration instructions are found below or can be found at www.ralphs.com, click on Community, click on Community Contributions, click on ‘Enroll Now’. If you don’t have computer access, please call us at 1-800-443-4438 for assistance.

Use you Ralph’s Rewards Card to Contribute Here’s How:

If you do not have a Ralph’s online account
1. Go to www.ralphs.com/account/create
2. Follow the easy steps to create an online account
3. You will be instructed to go to your email inbox to confirm your account
4. After you confirm your online account by clicking on the link in your email, return to
www.ralphs.com and click on ‘Sign In’, enter your email address and password.
5. View all your information and edit as necessary
6. Link your card to your organization by clicking on:
a. Community Rewards – Enroll
b. Type our NPO number 82287 or Neurocommunity.org
c. Remember to click on the circle to the left of your organizations’ name
d. Click on Enroll to finish your enrollment process

IF YOU HAVE ALREADY REGISTERED YOUR REWARDS CARD ON-LINE
(This means that you have already entered your email address and assigned yourself a password)

1. Log in to www.ralphs.com
2. Click Sign In
3. Enter your email address and password
4. Click on ‘Your Name’ (In the top right hand corner)
5. View all your information and edit as necessary
6. Link your card to your organization by clicking on:
a. Community Rewards – Re-Enroll
b. Type your NPO number or Name of your Organization
c. Remember to click on the circle to the left of your organizations’ name
d. Click on Enroll to finish your enrollment process