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#ALS AWARENESS #LouGehrigsDisease #PARKINSONS
Raising ALS | Lou Gehrigs Disease & Parkinsons Disease AWARENESS to the NEXT LEVEL!
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Help Preserve Access to SGDs! Help Co-Sponsor the Steve Gleason Act! Contact your Senator TODAY!

Help Preserve Access to SGDs! Help Co-Sponsor the Steve Gleason Act! Contact your Senator TODAY! | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it

Today Senator David Vitter (R-LA) introduced the Steve Gleason Act, legislation that will help preserve access to speech generating devices (SGDs) and eye tracking technology for people with ALS! U.S. Representative Cathy McMorris Rodgers (R-WA) will be introducing a companion bill in the House.  We urge you to contact your Senators and Representative and ask them to cosponsor the Steve Gleason Act! A sample email that you can personalize and send is available in our Advocacy Action Center here


Background:
As you know, the Centers for Medicare and Medicaid Services (CMS) have taken several different actions that deny people with ALS timely access to the SGDs. This legislation would reverse those actions and make sure that people have access to the SGDs they need, when and where they need them. Specifically, the bill would:
  • Eliminate the "capped rental" payment system for SGDs to once again enable people with ALS to purchase SGDs. This provision would allow people to keep their SGDs if they are admitted to a hospital, nursing facility or hospice. Importantly, it also would allow people to "unlock" their SGDs so they can access non-speech technologies such as email, the internet and environmental controls.
  • Ensure coverage for eye tracking and other technologies that enable people who have lost the use of their arms and hands the ability to access SGDs.
The bill does not address the "coverage reminder." This is the policy issued by Medicare's contractors that would have prohibited coverage for any SGD that included email, internet access even if those technologies were "locked." CMS has since rescinded the coverage reminder and is in the process of revising its SGD coverage policy so legislation is not needed at this time (click here to read The Association's comments submitted to CMS in December).

While CMS is in the process of revising their coverage policy, these other policies are impacting people with ALS today so it is absolutely critical to address these issues as soon as possible. People with ALS do not have time to wait. Therefore, please contact Congress today!

Thank you to everyone for all that you do to make a difference! Thank you especially to Steve Gleason whose relentless efforts have helped put a public spotlight on these issues and helped to move them forward.

Together, we are making a difference!
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TV anchor shares personal news in heartbreaking video: 'I have ALS'

TV anchor shares personal news in heartbreaking video: 'I have ALS' | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Larry Stogner, a retiring news anchor for an ABC affiliate in North Carolina, stunned viewers on Friday when he revealed he has ALS. "For...
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FDA January Approvals Bring New Parkinson's Therapies to U.S. Market | Michael J. Fox Foundation

FDA January Approvals Bring New Parkinson's Therapies to U.S. Market | Michael J. Fox Foundation | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
This past month the U.S. Food and Drug Administration (FDA) approved two new formulations of traditional Parkinson's therapy levodopa/carbidopa. Both therapies are designed to avoid "off" time in Parkinson's — when symptoms return before another dose of medication is due.
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Pacific Cove's curator insight, March 1, 4:13 AM

So what do I see now when I look in that mirror? I see a face that's begun to mask. I see a tremor that I can't control, and I see a body that moves with a great deal more effort that it once did. But when I talk to that reflection, I can now say, "Of all times to be staring down Parkinson disease, we are living in the most promising." #Parkinsons #Seniors #Tremors #Caregiving #Caregiver

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Steve Gleason to Join Vitter as State of the Union Guest

U.S. Senator David Vitter (R-La.) today announced that Steve Gleason will join him as his guest to President Obama’s State of the Union address to Congress.
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Simi Valley couple write book about life with Lou Gehrig's disease | "One Blink at a Time"

Simi Valley couple write book about life with Lou Gehrig's disease | "One Blink at a Time" | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Sometimes it took two days to write one page of “One Blink at a Time,” a book about a Simi Valley man who has lived for 30 years with Lou Gehrig’s disease, according to Ismail and Cheryl Tsieprati, the authors who recently celebrated their 44th wedding anniversary.
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Finance assistant admits stealing £100,000 from MND Association in Northampton

Finance assistant admits stealing £100,000 from MND Association in Northampton | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
A former finance assistant for The Motor Neurone Disease (MND) Association in Northampton has admitted stealing more than £100,000 from the charity.
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SENATE provides new incentives and opportunities to develop treatments for ALS.

SENATE provides new incentives and opportunities to develop treatments for ALS. | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Just before Congress adjourned for the year this week, Senators Michael Bennet (D-CO) and Orrin Hatch (R-UT) introduced the Senate version of the MODDERN Cures Act, legislation that would provide new incentives and opportunities to develop treatments for ALS.  Moreover, nearly 100 Representatives had cosponsored the House bill. These are significant milestones that not only indicate the legislation is gaining momentum, but also that Congress could take action on the bill early in 2015. 
    
Earlier this week, the President signed into law H.R. 83, the Consolidated and Further Continuing Appropriations Act, 2015, to fund the federal government through September 2015.  
 
As we reported in previous Advocacy Updates, the law provides $7,820,000 for the National ALS Registry in FY 2015, a more than 30% increase over last year! Additionally, the law includes $7,500,000 in continued funding for the ALS Research Program (ALSRP) at the Department of Defense.  The law provides $30 billion for the National Institutes of Health (NIH), $150 million more than last year, and specifically supports funding for ALS research.  Moreover, the law provides $1.6 billion for the National Institute of Neurological Disorders and Stroke (NINDS), which is $17 million more than last year. 
 
Thank you to everyone who reached out to Congress this year to make these and other successes possible!!!  

Happy Holidays!
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New Grants Will Address Unmet Needs in ALS Care - The ALS Association

New Grants Will Address Unmet Needs in ALS Care - The ALS Association | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
The ALS Association encourages scientific research to find a cure for ALS, heightens awareness of the nature of the disease, stimulates volunteerism and activism, and increases awareness of government leaders to encourage support of research and patient care.
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Ismail Tsieprati and His Wife Cheryl Tsieprati Publish Inspirational Memoir “One Blink at a Time”

Ismail Tsieprati and His Wife Cheryl Tsieprati Publish Inspirational Memoir “One Blink at a Time” | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Simi Valley, Calif., resident Ismail Tsieprati, who, along with his wife Cheryl, wrote “One Blink at a Time,” a book which will inspire people living with incurable, life-threateni
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Genes may play greater role in Lou Gehrig's disease

Genes may play greater role in Lou Gehrig's disease | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
In most cases of Lou Gehrig's disease, or amyotrophic lateral sclerosis (ALS), it's not known what caused the condition, but a new study finds genes may play a larger role than previously thought.
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ALS solution may come closer with Israeli-made app

ALS solution may come closer with Israeli-made app | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
After Ice Bucket Challenge, volunteers at Israel's SAP lab are hacking away at a big data project aimed at the dread disease
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Steve Gleason: "I have no intention of fading away"

Steve Gleason: "I have no intention of fading away" | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Steve Gleason may have lost his voice to ALS, but his message of hope and perseverance was heard loud and clear by players at his Alma mater, Washington State University, at the Apple Cup.
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Nancy Frates: Why my family started the ALS Ice Bucket Challenge. The rest is history - YouTube

When 27-year-old Pete Frates injured his wrist in a baseball game, he got an unexpected diagnosis: it wasn’t a broken bone, it was ALS. Better known as Lou G...
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ALS - Q & A with Anthony Carbajal - YouTube

Let's make a difference together! Please share, like, favorite & subscribe! Any & all donation to our family's medical & living expenses is insanely apprecia...
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Congress must increase funding for medical research

Congress must increase funding for medical research | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
  • For decades, medical research — and the cures and treatments it has discovered — have meant hope for millions of Americans living with disease and disability. But in recent years, those hopes have been clouded as Congress continues to significantly underfund the National Institutes of Health. The funding agreement for the 2015 fiscal year that Congress approved recently does little to.........................
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Food and Drug Administration: FDA Accelerated Approval (Phase 4) of Genervon's GM6 for Use In ALS

Food and Drug Administration: FDA Accelerated Approval (Phase 4) of Genervon's GM6 for Use In ALS | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it

My name is Nick, I am 54-years old and in October 2011, I was diagnosed with ALS. Today, I am in a wheelchair and cannot walk or stand. My arms grow weaker almost every day and my breathing is starting to be affected. I used to be very active but now I can only leave my home when I have someone with me who's strong enough to lift me into my wheelchair once I'm done scooting down to the bottom of the stairs on my butt. It can feel like I'm a 100-year old man who can't do things for himself anymore. At 54, I should still be a vibrant part of my community, but this disease is kicking me where it hurts.
Through the enthusiasm generated by the Ice Bucket Challenge, many people now know that ALS is a degenerative neurological disease that currently affects over 30,000 Americans, and as it stands the disease is always fatal. Most people with ALS are given only 2-5 years to live. When I was diagnosed, I was devastated - it took me months to accept it. Although I am now resolved, I have not lost hope.
Currently, there is only one drug available to treat ALS (riluzole).........


To view trial results, please see "Genervon Announces ALS and PD Phase 2a Trial Results" and "Genervon Announces ALS Compassionate Use Results" at the link below.
http://www.genervon.com/genervon/about_pressreleasestxt.php
 
 

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"EMPIRE" star Terrence Howard's role includes being diagnosed with ALS.

Watch a special preview of FOX's new hip hop drama Empire,starring Terrence Howard and Taraji P. Henson. Welcome to EMPIRE, a sexy and powerful new drama abo...
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BrainStorm Announces Final Analysis of Phase 2a ALS Study Showing Nearly All Subjects Experienced Clinical Benefit from NurOwn

BrainStorm Announces Final Analysis of Phase 2a ALS Study Showing Nearly All Subjects Experienced Clinical Benefit from NurOwn | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Autologous Stem Cell Therapy for neurodegenerative diseases such as ALS, using bone marrow-derived, neurotrophic factor-secreting mesenchymal stem cells.
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USA - Project MinE | Make it Yours in 2015! A Cure for ALS/MND

USA - Project MinE | Make it Yours in 2015! A Cure for ALS/MND | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Through its Translational Research Advancing Therapies for ALS (TREAT ALS™) program, The ALS Association’s global research program has funded more …
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Researchers develop new eye tracking technology that can assess impact of brain injury

Researchers develop new eye tracking technology that can assess impact of brain injury | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Researchers at NYU Langone Medical Center have developed new technology that can assess the location and impact of a brain injury merely by tracking the eye movements of patients as they watch music videos for less than four minutes, according to a study published Friday on-line in the Journal of Neurosurgery.
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Kevin Turner, leading plaintiff in NFL concussions lawsuit, battles ALS

Kevin Turner, leading plaintiff in NFL concussions lawsuit, battles ALS | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Kevin Turner is a plaintiff in the massive lawsuit against the league but his condition is worsening by the day.
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Fund The Prize: Solve ALS Together

Fund The Prize: Solve ALS Together | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
FUND THE PRIZE! A competition using technology and open science to accelerate a cure for ALS.
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Ice Bucket star on ALS fight: 'I want to grow old with my wife'

Ice Bucket star on ALS fight: 'I want to grow old with my wife' | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
This month, hear from the newsmakers behind some of TODAY.com's biggest moments of the year in "2014 Voices," a special series of essays...
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It’s a girl - firefighter with ALS gives birth to Arabella Grace

It’s a girl - firefighter with ALS gives birth to Arabella Grace | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Shoreline Times is your source for all Shoreline region 24-hour breaking news, local news, sports, entertainment and more. View weather updates, watch videos and photos. Keep up with News and local Sports. Find restaurants, entertainment, cars, homes and jobs at Shoreline Times.
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Anthony Carbajal, ALS Ice Bucket Challenge Viral Star, Shares Touching Wedding Photos

Anthony Carbajal, ALS Ice Bucket Challenge Viral Star, Shares Touching Wedding Photos | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
See touching photos from Anthony Carbajal's (ALS ice bucket challenge viral star) wedding...
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