Lambert-Eaton Myasthenic Syndrome (LES)

          101  words you will start to hear, This has been a year of firsts for Lambert-Eaton myasthenic syndrome (LEMS) patients. Two medications approved by the U.S. Food and Drug Administration became commercially available for patients. It is nearly unheard of to have approvals for a single rare disease within months of each other. Patients now have treatment options that are proven to be effective for LEMS. In June, I was asked to be a columnist for  Lambert-Eaton News  and “ LEMme Tell Ya ” was born. I never imagined writing a weekly column about my disease. In addition to my column,  Lambert-Eaton News  publishes updated information multiple times a week for LEMS patients, their families, and providers. There was little to no information about LEMS when I was diagnosed in 2016, and now there is a weekly newsletter! As we wrap up 2019,  Lambert-Eaton News  is taking patient information one step further by launching the...

How-much-will-a-pack-of-joints-cost-the-future-of-mass-market-marijuana? Marijuana is for sale in Colorado and Washington, so it's seemingly only a matter of time before packs of joints are available as well — but how much will a pack run you? After doing some extensive research,  Fast Company 's   Thor Benson came up with around $50. He reached that number by comparing the estimated cost of marijuana production (about $2 to $3 per gram) with common industry margins (rumored to be between 40 percent and 50 percent) and factoring in the economies of scale wielded by large companies like Marlboro. At the very most, an average pack of joints might run you about $120 — the amount Denver-based store Medicine Man asks for a 20-pack of pre-rolled, one-gram joints. Benson even sought input from Jeff Caldwell, a representative from Marlboro's parent company, but Caldwell wouldn't speculate on the potential costs of joint packs. Caldwell said that his company had "no plans t...

 On COVID-19: And LEMS Cancer patients and caregivers share their current life realities.   “I feel overwhelmed with uncertainty, fear, shock, worry, anxiety, sadness, and grief – similar to how I felt when I found out about my daughter’s cancer diagnosis.” This honest response to the influx of news and conversations surrounding the coronavirus outbreak comes from Joan, whose daughter Sarah is currently in maintenance care for optical glioma bilateral. What’s more, Joan is temporarily out of work because of the ongoing crisis, yet another similarity to when she left her job to be by Sarah’s side during treatment. From emotional distress to temporary losses in income, the parallels between living with cancer and navigating this global pandemic are undeniable. COVID-19 is also taking an especially harsh toll on those who are already vulnerable, and we recognize that the financial barriers and health concerns of cancer are only compounded by the spread of the virus. Cancer won’t ...

  How Patients with Cancer, and Survivors, Can Manage Stress Through COVID-19 Uncertainty.   The recent and rapidly evolving developments surrounding the novel coronavirus — also known as COVID-19 – has led to significant uncertainties around the world. Those unknowns have led to panic and have subsequently increased the anxiety and stress some may be feeling, particularly those who have survived cancer or are currently in treatment. “Fear is a natural human emotion. We all have fear during this pandemic, yet the higher risk for health complications from COVID-19 may heighten the stress faced by individuals with cancer. We all need to focus on actions we can take to reduce our risk of contracting the virus, such as social distancing. We can also take practical steps to cope adaptively with chronic stress because the fear is probably not going away anytime soon,” Dr. Shelley Johns, a researcher with the Indiana University Melvin and Bren Simon Comprehensive Cancer Center, said ...

CBD Cannabis CBD SEED 101 Marijuana seeds are considered a cannabis product just like flower, edibles, and concentrates. Their legality depends on which state you live in. People living in states with adult-use legalization can buy, produce, and sell seeds within their own state, but seeds can’t cross state lines. People living in states with medical marijuana legalization can only buy seeds if they have a medical card. Seed banks exist outside of the US and can sell them for “souvenir purposes,” but it is illegal to bring seeds into the US and Customs will seize any cannabis seeds they find in packages or on a person Where can I buy cannabis seeds? Many world-renowned seed banks are overseas in the Netherlands, the UK, Spain, and other countries where cannabis laws are less restricted. Seed banks provide seeds from a variety of different breeders. In states with adult-use legalization or a medical marijuana program, you can buy seeds within your own state, either at a dispensary or ...

 <script data-ad-client="ca-pub-3487722702377998" async src="https://pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script> Tips for Dealing With Pain When You Have LEMS What causes pain in LEMS? In LEMS, the immune system mistakenly attacks nerve cell endings where they meet muscle cells. This impedes the transmission of electrical impulses from the nerve cells to the muscle cells. Over time, they waste away due to inactivity, causing pain. Where does it hurt? Arm and leg movements are affected in LEMS. People with the disorder may find it difficult to walk, get up from a chair, climb steps, or exit a car. Although the levels of severity vary, LEMS patients commonly experience pain in their lower limbs, including the thighs, and in the lower back. Your muscles may ache and become tender. In some cases, simple exertion can cause this. Pain treatments Doctors usually address pain and improper gait — a person’s ...

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http://norml.org/news/2015/02/05/portland-norml-responds-to-olcc-s-first-meeting-on-implementation-of-measure-91-marijuana-legalization

S&P 500 2,037 +15.99 +0.79% PRESS RELEASE Catalyst Pharmaceuticals Announces Encouraging Pre-NDA Meeting With the FDA for Firdapse(TM) as a Treatment for Lambert-Eaton Myasthenic Syndrome (LEMS) By Published: Feb 2, 2015 8:03 a.m. ET SHARE   CORAL GABLES, Fla., Feb 02, 2015 (GLOBE NEWSWIRE via COMTEX) -- Catalyst Pharmaceutical Partners, Inc. CPRX, +0.00% (Catalyst Pharmaceuticals), a biopharmaceutical company focused on developing and commercializing innovative therapies for people with rare debilitating diseases, today announced it has held a productive pre-New Drug Application (NDA) meeting with the U.S. Food and Drug Administration (FDA) regarding Firdapse™ for the treatment of LEMS. Based on this meeting, Catalyst believes that its Phase 3 clinical program will provide acceptable support for submission of an NDA for Firdapse™ for LEMS. The Company plans to complete a full NDA submission during the 3rd quarter of 2015. Catalyst will confirm the overall regulatory path for...

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http://money.cnn.com/news/newsfeeds/articles/globenewswire/10101677.htm

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http://globenewswire.com/news-release/2014/09/29/669185/10100382/en/Catalyst-Pharmaceuticals-Announces-Positive-Top-Line-Phase-3-Data-From-Pivotal-Firdapse-Clinical-Trial-in-Patients-With-Lambert-Eaton-Myasthenic-Syndrome-LEMS.html

Investigational Drug, Firdapse, Available at No Cost to U.S. Patients with LEMS Coral Gables drug company to make new medicine available at no cost April 23, 2014 Evan S. Benn Coral Gables-based Catalyst Pharmaceutical Partners soon will make its investigational drug Firdapse available at no cost to patients with a certain autoimmune disorder. The drug, which is supposed to relieve muscle weakness in people with Lambert-Eaton Myasthenic Syndrome, is entering the final phase of its clinical trials. Catalyst said it expects to submit an application for Firdapse’s approval with the U.S. Food and Drug Administration next year. Catalyst has been leading the development of Firdapse in the United States since 2012; the drug already is government-approved and commercially available in Europe. During the U.S. approval process, Catalyst said it will establish an expanded-access program to make Firdapse available for free to patients with LEMS. “As part of our ongoing commitment t...

www.netag.nhs.uk/files/appraisal-reports/Firdapse - NETAG appraisal report - Nov 2011 -WEB VERSION.pdf

Firdapse ®  (currently approved in the EU) is the first and only approved drug for the symptomatic treatment of Lambert-Eaton Myasthenic Syndrome in adults, a rare autoimmune disease with the primary symptoms of muscle weakness. Firdapse at a Glance Approved in the European Union Manufactured and commercialized by BioMarin in the European Union Designated as an orphan drug in the United States, the European Union and and Switzerland Regulatory Status In December 2009, Firdapse received marketing approval from the European Commission making it the first approved therapy for the symptomatic treatment of LEMS. Firdapse has been designated an orphan drug in the EU, which grants market exclusivity for ten years. Commercialization Plan Firdapse is commercialized by BioMarin in the European Union. In October 2012, BioMarin out-licensed North American rights of Firdapse to Catalyst Pharmaceutical Partners. For more information on Firdapse development plans in the U.S., plea...