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#ALS AWARENESS #LouGehrigsDisease #PARKINSONS
Raising ALS | Lou Gehrigs Disease & Parkinsons Disease AWARENESS to the NEXT LEVEL!
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Tim Shaw Living with ALS-Former NFL Linebacker

Tim Shaw Living with ALS-Former NFL Linebacker | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Former linebacker Tim Shaw's courageous battle with ALS.
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Prize4Life - Prize Model - ALS Treatment Prize

Prize4Life - Prize Model - ALS Treatment Prize | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Join the fight against Amyotrophic Lateral Sclerosis (ALS).
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Dying for tech toys? Chip boom reflected in rising ALS rates

Dying for tech toys? Chip boom reflected in rising ALS rates | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
When Daniel Berry pulled a muscle in his back it was the beginning of the end. But his death led to a discovery that may affect the health and future of everyone living around Portland.


  • UPDATE: 2/11/2015

Fed-hazmat-watchdog-OHA-reviewing-KATU-report-on-ALS-deaths-among-Intel Workers

http://www.katu.com/news/investigators/Fed-hazmat-watchdog-OHA-reviewing-KATU-report-on-ALS-deaths-among-Intel-workers291445611.html

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* STEM CELL NEWS *- Gordie Howe making dramatic recovery after stem cell therapy

* STEM CELL NEWS *- Gordie Howe making dramatic recovery after stem cell therapy | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
Detroit Red Wings legend Gordie Howe has made such a dramatic recovery after having stem cell therapy in December in Tijuana, Mexico, that he's heading to Saskatchewan this weekend for a fund-raiser.
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Robert Kraft invites Pete Frates to Super Bowl, logistics keeping ALS patient away

Robert Kraft invites Pete Frates to Super Bowl, logistics keeping ALS patient away | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
New England Patriots owner Robert Kraft personally invited Pete Frates and his wife to be his guests at the Super Bowl in Arizona, however they cannot attend.
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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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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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An insurance Catch 22: Family fights for ALS benefits

An insurance Catch 22: Family fights for ALS benefits | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
A Norfolk man says he has insurance coverage for his wife who has ALS but can't get the benefits he needs.
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Pitt Establishes Live Like Lou Center for ALS Research - YouTube

On Feb 5, 2015, the University of Pittsburgh announced the creation of the Live Like Lou Center for ALS Research. An O’Hara Township couple, Neil and Suzanne...
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Neurologists find movement tracking device helps assess severity of Parkinson's disease

Neurologists find movement tracking device helps assess severity of Parkinson's disease | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it
A device that measures movement and balance can effectively help assess and track the progression of Parkinson's disease, even when medications are used to reduce Parkinson's symptoms, UT Southwestern Medical Center research found.

Via SustainOurEarth
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TEAM Gleason/Superbowl 2015 - YouTube

TEAM Gleason ● Superbowl 2015 ●
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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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Run LOCO for ALS in One Month at 9th Annual FIESTA 5k/15k Challenge

Run LOCO for ALS in One Month at 9th Annual FIESTA 5k/15k Challenge | #ALS AWARENESS #LouGehrigsDisease #PARKINSONS | Scoop.it

Via Cure for ALS
TEAM Mike Lopez Memorial Foundation |Find us on Twitter:@TEAMCUREALS's insight:
VIA: Cure for ALS's insight:

There is a lot of important information here so please make sure you read all the way through. At the top of the news is that entry fees will increase on Friday, April 17. Also, if you want to guarantee you’ll receive a t-shirt in the size you want you, make sure you are registered before April 17.

 

Race day is Saturday, May 2, 2015 at the Forsyth Conference Center at Lanier Tech in Cumming. Important details will be posted on the main website and registration page so be sure to check them often for any announcements.

 

REGISTRATION: https://runsignup.com/Race/GA/Cumming/FIESTA5k15kChallenge ;

 

MAIN WEBSITE: www.FiestaRunGA.com 

 

CAN'T JOIN US THIS YEAR? MAKE A DONATION AT https://www.crowdrise.com/2015fiesta5k15kALS

 

THINGS TO REMEMBEREntry fees increase for the 15k and 5k on April 17.You must be registered by April 16 to guarantee a race t-shirt. Chip timing for the 15k and 5k races.The FIESTA 5k course is a certified Peachtree Road Race qualifying course.START TIMES: FIESTA 15k starts at 7:45am. FIESTA 5k starts at 8:05am. **Ronald Reagan Blvd. will close at7:30am so make sure to arrive for all races before road closure**

Awards for 15k:

Top 3 Overall Male/Female will receive a TIMEX Ironman watchAdditional awards presented to: Overall Male/Female, Overall Masters Male/Female, and Top 3 in Age Groups of 5 year incrementsAll 15k finishers receive a Custom Finisher Medal

Awards for 5k:

Overall Male/Female, Overall Masters Male/Female, and Top 3 in Age Groups of 5 year increments.

Awards are not presented in the Fun Run but those registered do receive a t-shirt with their entry.

Lots of parking, great post-race party, music, refreshments, and FUN!

100% of the proceeds benefit the Emory ALS Center. www.als.emory.edu 

 

COMING SOON: Be on the lookout for an announcement for a 21 Day Fitness Challenge for you to 1) make sure you are ready for your best FiestaRun ever, and 2) keep fit and healthy beyond the Fiesta 5k/15k Challenge.

 

PACKET PICK UP TIMES:

Friday, May 1 from 11am to 7pm at Totally Running - 405 Peachtree Pkwy, Suite 105, Cumming, GA 30041. Registration also available.Saturday, May 2 beginning at 6:45am at the Forsyth Conference Center. Race day registration available.EET'S NACHO ORDINARY RUN!Celebrate Life...Imagine a Cure. Run LOCO to stop ALS!
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Cure for ALS's curator insight, April 2, 10:27 AM

There is a lot of important information here so please make sure you read all the way through. At the top of the news is that entry fees will increase on Friday, April 17. Also, if you want to guarantee you’ll receive a t-shirt in the size you want you, make sure you are registered before April 17.

 

Race day is Saturday, May 2, 2015 at the Forsyth Conference Center at Lanier Tech in Cumming. Important details will be posted on the main website and registration page so be sure to check them often for any announcements.

 

REGISTRATION: https://runsignup.com/Race/GA/Cumming/FIESTA5k15kChallenge ;

 

MAIN WEBSITE: www.FiestaRunGA.com 

 

CAN'T JOIN US THIS YEAR? MAKE A DONATION AT https://www.crowdrise.com/2015fiesta5k15kALS

 

THINGS TO REMEMBEREntry fees increase for the 15k and 5k on April 17.You must be registered by April 16 to guarantee a race t-shirt. Chip timing for the 15k and 5k races.The FIESTA 5k course is a certified Peachtree Road Race qualifying course.START TIMES: FIESTA 15k starts at 7:45am. FIESTA 5k starts at 8:05am. **Ronald Reagan Blvd. will close at7:30am so make sure to arrive for all races before road closure**

Awards for 15k:

Top 3 Overall Male/Female will receive a TIMEX Ironman watchAdditional awards presented to: Overall Male/Female, Overall Masters Male/Female, and Top 3 in Age Groups of 5 year incrementsAll 15k finishers receive a Custom Finisher Medal

Awards for 5k:

Overall Male/Female, Overall Masters Male/Female, and Top 3 in Age Groups of 5 year increments.

Awards are not presented in the Fun Run but those registered do receive a t-shirt with their entry.

Lots of parking, great post-race party, music, refreshments, and FUN!

100% of the proceeds benefit the Emory ALS Center. www.als.emory.edu 

 

COMING SOON: Be on the lookout for an announcement for a 21 Day Fitness Challenge for you to 1) make sure you are ready for your best FiestaRun ever, and 2) keep fit and healthy beyond the Fiesta 5k/15k Challenge.

 

PACKET PICK UP TIMES:

Friday, May 1 from 11am to 7pm at Totally Running - 405 Peachtree Pkwy, Suite 105, Cumming, GA 30041. Registration also available.Saturday, May 2 beginning at 6:45am at the Forsyth Conference Center. Race day registration available.EET'S NACHO ORDINARY RUN!Celebrate Life...Imagine a Cure. Run LOCO to stop ALS!
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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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