Medical research advocates warn Congress about the dire impact that automatic spending cuts scheduled to take effect in January would have on efforts to control disease and develop life-saving treatments.
UCSD scientists announced last week that a metabolism-boosting protein, PCG-1α, may help restore cell function in individuals afflicted by Lou Gehrig’...
In an effort to identify the underlying causes of neurological disorders that impair motor functions such as walking and breathing, UCLA researchers have developed a novel system to measure the co...
****THERE IS A CURE FOR ALS**** BUT, we need you to Join Our T.E.A.M. to help us FIND IT! The month of May is ALS AWARENESS Month. *We ask that you please consider displaying this photo as your Facebook|Google+|Twitter|Pinterest| Profile Picture for the Month of May. *How AWESOME would it be to see all 1146 of our Facebook Fans change their Profile Pictures! https://www.facebook.com/TEAMCureALSFoundation Help Us Stay Committed to a CURE! We can only get there as a
T.E.A.M.-Together Everyone Accomplishes More!
*DEAR ALS written by: Tim Bargar|ALS Survivor & Warrior*
Dear ALS, As I sit here and ponder the future and what it has in store for me, I can't seem to quit thinking and asking how I got here. So many questions with so little answers. Why is everyone's progression so different? Why one day I can eat and other days I can't? Why do you steal my voice but not my thoughts? Sometimes I think not remembering the daily hell would be better. The not being able to talk without someone saying "what?" Or better yet not even being able to scratch ANYTHING because you have paralyzed my fingers, hands, arms, legs, feet, and toes. I mean did you intend on me being 100% dependent on someone to feed me, bath me, groom me, dress me, transport me, oh and god forbid go to the bathroom? You couldn't of left me 1 of those? REALLY? Why so cruel? On top of th...at you haven't given us inclination of any type of cure or relief? 5,000 people a day are diagnosed each year with MS and ALS. There are 600,000 people living with MS and only 30,000 people are living with ALS. The difference: 7 treatments are available for MS and only 1 for ALS. And the 1 doesn't even work on the majority of people diagnosed. But wait I need to retrace and go back to the things you haven't stolen. Like my mind, my heart, and my spirit. Maybe remembering the daily hell helps me, helps me concentrate more, love more, and hope more. HOPE, wow that is a powerful word. What's wrong ALS? Does that word scare you? Does it weaken you? I think it does. I believe that your foundation shakes and quivers as the hope courses through my veins. My competitive juices are raging. C'mon, bring it! Is that all you got? C'MON DAMN IT. THIS IS MY HOUSE. NO ONE AND I MEAN NO ONE COMES IN MY HOUSE AND PUSHES ME AROUND. I have HOPE in my corner and he is the best in the business. So ALS back off!!! As long as I can take a breath, I will have HOPE. “Dum spiro, spero (Latin), "While I breath, I hope"” Sincerely, Tim Bargar ALS Survivor and Warrior
Follow Tim on Twitter: @BargarTim
P.S. All of my friends and family have HOPE with me.
Dear friends, I am not able to use a keyboard. In order to type I use an on-screen keyboard. You move the mouse and click on one character at a time. Took me 3 hours to do this. May is ALS awareness month so please re-post this for me. Thank you, Tim Bargar
Three U.S. hospitals have begun implanting a device that stimulates the respiratory muscle in the chest and draws air into the lungs of patients suffering from amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease) under recently approved Food...
Cedars-Sinai Medical Center has become the first West Coast site, and one of only three nationwide.............
- Investigator 'hopeful that the Unified Dyskinesia Rating Scale will be a useful tool to help translate research into treatments' -...
"Dyskinesia can be a significant problem for people with Parkinson's disease and there is currently no therapy approved by the U.S. Food and Drug Administration (FDA) to treat it," said Stebbins. "But there has been a big push over the past few years in both academia and the pharmacological industry to develop drugs to treat this side effect. We're hopeful that the UDysRS will be a useful tool to help translate research into treatments."
In the month of ALS awareness, my Foundation, Team Cure ALS and I really, really want to give some props to the girls of the Delta Gamma sorority at the University of Oregon. For the second straight year, the Delta Gamma Duck Gals have selected Team Cure ALS Foundation as 1 of 3 recipients of their annual Anchor Splash philanthropy.
Last year the Delta Gamma Ducks raised close to $18,000 for Team Cure ALS Foundation in their week long on-campus fundraising campaign. During the kick-off to the annual Anchor Splash, the University of Oregon student body is introduced to me, Team Cure ALS Foundation President and former Civil War rival from Oregon State University… And those students and the Delta Gamma Ducks knowingly gave their time and money to helping team up with a former Beaver to find a cure for ALS!!...
Pretty awesome when young people can put life into perspective!! In the fight to find a Cure for ALS there are no rivalries, only teammates committed to finding a cure for ALS... We need more of these, me becomes We...I love my Delta Gamma Ducks. Remember, me becomes We!! Stay tuned… *Mike Lopez|TEAM Cure ALS Foundation|President-Founder
What would you do if the goals you'd spent your life working toward were suddenly taken away? Beaverton, Oregon Rob Summers has spent the last six years answering that question.
Rob's Attitutde, Determination, Inspiration and Positive Spirit is remarkable.
ALS Untangled uses social networking to bring the ALS community together.
Richard Bedlack wanted to give his patients answers. As a Packard scientist and the director of the ALS Clinic at Duke University, his patients frequently asked him about a variety of treatments for their disease..........
This Video was done to gain awareness for MND (Motor Neurone Disease)|ALS|Lou Gehrigs Disease and to promote 'Eye Gaze' to show people suffering with the disease that they can still be productive at their worst.
Cytokinetics Announces Encouraging Results From Two Phase II Clinical Trials Evaluating CK-2017357 in Patients With Amyotrophic Lateral Sclerosis
The clinical trials results were reported in an oral presentation and a poster at the American Academy of Neurology 64th Annual Meeting in New Orleans, Louisiana.
In April, at The American Academy of Neurology Annual Meeting in New Orleans, The ALS Association brought together an overflow crowd of researchers, industry executives, and many others, all with the common purpose of finding new treatments for ALS. The meeting of the ALS Drug Company Working Group organized by the Research and Public Policy Departments of The ALS Association was standing room only, an indication of the broad interest in the research and drug development world in developing treatments for the disease.
“Our purpose for the meeting was to encourage those in the field and those thinking of getting into it, to talk with each other, and to share ideas and strategies for fighting ALS. That's what will help us move ahead,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D.......................................................
Announcing the 2012 Spring Lab Challenge: Goal: Fund one month of stem cell growth and development in the Jenifer Estess Lab. Cost: $35,000
Now you can help:
GOAL:Raise $35,000 to fund one month of cell growth and development in the Jenifer Estess Laboratory for Stem Cell Research
Now you can help scientists create new models of brain disease. Check out this video and get involved.
Donate $100 and receive a Project A.L.S. Women and the Brain 2012 T-shirt Donate $50 and receive a vintage Project A.L.S. T-shirt Donate $25 and receive a Project A.L.S. temporary tattoo
WHEN Tony Conway was diagnosed with motor neuron disease|MND|ALS at the age of 32, just months after his second gorgeous daughter was born, his first thought was whether he would get to see his girls grow up.
ALS FACT: Don't Let this Happen to YOU or a FAMILY Member
*More than 5,600 Americans are diagnosed with ALS each year or two new ALS cases per 100,000 people (incidence).
*Approximately 35,000 people at any given time are living with ALS in the United States or six to eight people per 100,000 population
*Life Expectancy of an ALS Patient averages approx. 2-5 years from diagnosis.
*About 20% live 5 years or more and up to 10% will survive more than 10 years.
*ALS Can Strike ANYONE, and it is projected that of the U.S. Population living today, in excess of 300,000 Americans will die unless a CURE or PREVENTION is found.
*Share some ALS AWARENESS Today and Join OUR FIGHT for a CURE!
Parkinson’s disease is a progressive degenerative disease which causes mutations in the brain, resulting in shaking, difficulty speaking, and slowed movement. Over time, these effects worsen.
The fALS Connect registry aims to connect fALS families with scientists who are engaged in fALS research. The goal of the registry is to accelerate progress towards finding a cure for this disease. We encourage both affected individuals and unaffected family members to sign up for the registry.
ALS that runs in the family is known as “familial ALS” (or “fALS” for short). The type of ALS that is not familial is often referred to as “sporadic ALS”. Familial ALS is very rare; only about 10% of all ALS cases are familial. A simple way to think about familial vs. sporadic ALS: if more than one member of your family has had ALS, then it is very likely that you belong to a fALS family. If only one person in your family has ever had ALS, then it is most likely that ALS does NOT run in your family.
Faces of hope are plastered all over Bayou St. John, on the sides of businesses and homes. The black and white photos are part of a project started by local photographer Frank Relle on behalf of his friend Steve Gleason....................
Ron Griffith passed away from ALS this past November. While settling his estate and contemplating the next chapter of her life, his wife Connie found a business plan and proposals from a bottling company on Ron’s computer. “I kept getting these signs and when I found the information Ron had researched, I knew it was meant to be,” Connie said. Inspired by her late husband's dreams, Gator Ron’s Zesty Hot Sauce was born.
To help further her husband’s dream of ending the suffering for ALS patients, Connie decided that 10% of the profits from Gator Ron’s will be directed back to the Robert Packard Center for ALS Research.....................................
OUR MISSION: The mission of Hope Loves Company is to provide emotional and educational support to children and young adults who have family members battling ALS.
Hope Loves Company is a non-profit organization founded in 2007. We are currently in the process of establishing 501 C(3) status.
*Have you ever noticed that ALS is picky?*
It picks those who are courageous. It picks those who are compassionate. It picks those who are kind. It picks those who will continue to STAND UP, even after their legs can no longer do so.
I have never met (and I have met SO many!) an ALS patient who did not exude all of the above characteristics. They make me smile. They make me proud. They give ME strength to continue my journey to establish Hope Loves Company.
ALS patients and their families remind us that we need to lead lives of purpose.
"Out of suffering have emerged the strongest souls." E.H.Chapin
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