Capillary Malformation-Arteriovenous Malformation (CM-AVM)

Welcome to the Noonan Syndrome Road Map

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FDA Approves Radicava (edaravone) to Treat ALS

Regenerative Neurobiology

ALS Treatment Updates

  • New ALS Treatment Offer Hope by Infusion 28 Nov 2017 20:56 KMOX ST. LOUIS (KMOX) – Local ALS patients and their doctors welcome the first new drug to treat the disease in more than 20 years. It’s called Radicava, a near-daily infusion treatment that helps slow progression of the degenerative disease better known as …
  • Cytokinetics Pivots to Another ALS Drug After Phase 3 Failure 21 Nov 2017 21:55 Xconomy Xconomy San Francisco —  Cytokinetics’ bid to offer a new drug for amyotrophic lateral sclerosis (ALS) was dealt a setback after the company’s lead experimental treatment for the disease failed in a late-stage clinical trial. The results mean the end for …
  • Mid-Afternoon Market Update: Dow Gains 180 Points; DSW Shares Drop On Earnings Miss 21 Nov 2017 20:12 Benzinga Toward the end of trading Tuesday, the Dow traded up 0.77 percent to 23,611.66 while the NASDAQ climbed 0.95 percent to 6,855.20. The S&P also rose, gaining 0.67 percent to 2,599.38. Leading and Lagging Sectors Tuesday afternoon, the technology sector …
  • Mid-Day Market Update: Signet Jewelers Falls After Q3 Results; Cheetah Mobile Shares Surge 21 Nov 2017 18:09 Benzinga Midway through trading Tuesday, the Dow traded up 0.73 percent to 23,600.44 while the NASDAQ climbed 0.97 percent to 6,856.47. The S&P also rose, gaining 0.63 percent to 2,598.40. Leading and Lagging Sectors On Tuesday, the technology sector proved to …
  • A treatment for ALS just failed a key clinical trial 21 Nov 2017 16:48 Business Insider Cytokinetics said Tuesday that its treatment for ALS failed in a late-stage clinical trial.  Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, is a fatal neuro-degenerative condition that affects nerve cells in the brain and the spinal cord. …
  • Why Is Cytokinetics Plunging Today? 21 Nov 2017 15:20 Benzinga Cytokinetics, Inc. (NASDAQ: CYTK) shares are plunging in pre-market trading Tuesday on the back of negative trial results for its amyotrophic lateral sclerosis, or ALS, treatment candidate tirasemtiv in a late-stage study. The results of the international …
  • Cytokinetics abandons ALS drug after failed trial, shares tank 21 Nov 2017 14:26 Reuters (Reuters) - Cytokinetics Inc will stop developing one of its treatments for ALS, which afflicts Stephen Hawking, after the drug failed in a late-stage trial, the company said on Tuesday, sending its shares tumbling about 35 percent. The drugmaker said two …
  • Cytokinetics abandons ALS drug after failed trial 21 Nov 2017 14:15 Charleston Daily Mail By Reuters Published: 08:05 EST, 21 November 2017 | Updated: 08:05 EST, 21 November 2017 Nov 21 (Reuters) - Cytokinetics Inc said on Tuesday it would discontinue developing its drug to treat ALS, a fatal neuro-degenerative disorder, after the treatment …
  • New ALS treatment provides optimism for afflicted patients 11 Nov 2017 02:04 KTVI Please enable Javascript to watch this video ST. LOUIS - The ALS Association will raise buckets of ice to support families challenged by the disease.  The Third Annual Ice Bucket Challenge will fund research and other resources needed by ALS patients. …
  • Cytokinetics: Separating The Wheat From The Chaff 26 Oct 2017 20:47 Seeking Alpha Separating the wheat from the chaff in life is separating what's hard from what's impossible. Hard is good. All meaningful accomplishments are the result of laboring at what's hard. Impossible is bad. Dreams are crushed, money, and the most …

 

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ALS Groups

 

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Noonan Syndrome News

  • International symposium on developments in neurofibromatoses, rasopathies to be held at Kochi from Nov 27─29 25 Nov 2017 06:22 Pharmabiz.com An international symposium on new developments in neurofibromatoses and rasopathies will be held from 27th  to 29th November 2017 at Crowne Plaza, Kochi (Cochin), Kerala, South India, which will deliberate on their management, diagnosis, current and …
  • Exhausted top cop takes six weeks off to recover 'both physically and mentally' 24 Nov 2017 06:59 Age Victoria Police Chief Commissioner Graham Ashton is taking sick leave, saying he is run down physically and mentally. Mr Ashton said on Friday that he would take up to six weeks off to recover from a "fatigue-related" illness. Victoria Police …
  • Russo Partners Teams with Medovex to Highlight Medical Technology Innovation with DenerveX System for Treatment of Chronic Back Pain 13 Nov 2017 13:49 Kait Information contained on this page is provided by an independent third-party content provider. Frankly and this Site make no warranties or representations in connection therewith. If you are affiliated with this page and would like it removed please …
  • Hearing date fixed for first of potentially hundreds of special needs assessment delay cases 07 Nov 2017 15:41 Breaking News from Ireland A judge has fixed a hearing date next February for the first of potentially hundreds of legal actions against the HSE over delays in carrying out special needs assessments of children with a range of conditions including autism. Mr Justice Seamus Noonan …
  • Want to know what aliens look like? Ask Darwin 04 Nov 2017 03:10 Weekly Times Now SICK of guys in rubber suits filling your favourite Sci-Fi shows? Turns out, their inevitably bipedal form could be much closer to the truth than you think. How do we know? Some of the best minds on our planet have been at work figuring out whether or not …
  • Aliens won’t be all that odd after all 04 Nov 2017 02:28 Weekly Times SICK of guys in rubber suits filling your favourite Sci-Fi shows? Turns out, their inevitably bipedal form could be much closer to the truth than you think. How do we know? Some of the best minds on our planet have been at work figuring out whether or not …
  • 'Little lobbyists' help save the health care law, for now 30 Sep 2017 18:59 Daily Gazette WASHINGTON — Anna C. Corbin had not been involved in politics, had not even been to the Capitol before this year. But since March, she has made the two-hour drive here from her home in Hanover, Pennsylvania, 15 times so her sons, Jackson and Henry, could …
  • Eleanor Tikva Sevy 26 Sep 2017 05:20 Arizona Jewish Post Eleanor Tikva Sevy, daughter of Libby Quinn and Gabriel Sevy, will celebrate becoming a bat mitzvah on Saturday, Sept. 23 at Temple Emanu-El. She attends Khalsa Montessori School where her favorite subject is Reading Zone. Nora participates in teen choir, …
  • Riding lesson a landmark for Rochester 7-year-old girl 13 Sep 2017 20:02 Southcoast Today Steve Urbon @SteveUrbonSCT ROCHESTER — The 7-year-old girl riding a horse called Surprise was having a very good day Tuesday at the Clover Creek Farm on New Bedford Road. It was her second riding lesson, something Alexa Bennett has been wishing and hoping …
  • Kids lobby lawmakers for health care 12 Sep 2017 07:47 Tribune Chronicle AP photos / Dan Rainville, The Evening Sun Anna Corbin sits between her two sons, Jackson, left, and Henry, as they play with their dog, Eloise, inside their Hanover, Pa., home. Henry, 9, and Jackson, 11, both have Noonan syndrome, a genetic disorder …

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