media

  1. A

    March in DC for Iplex 11/11/08

    Well, Team Iplex has finally done it. We have written to Insmed, Genentech and Tercica, the media outlets, etc. What we have gotten is a public policy statement by Insmed apologizing that they can only give Iplex to Italian ALS patients. Genentech and Tercica have maintained silence. Now we are...
  2. M

    Can someone please help me?! =/

    Hello everyone! Let me start out by saying im truly touched by alot of the stories ive read on this site and how supportive everyone is. This is my 1st time posting anything so im sorry if i make it a long story. My name is Gina and im 18years old. Going back to august 07, I gave birth to my son...
  3. freddiesnetty

    Freddie and USA Today

    Hi I just wanted everyone to check out this link on my hubby: We were approached by abc and cbs. I know that some of us do not get the media attention but I am in the fight for all of us.... Stu this is the media attention I was talking about, lets get this together and roll with it, Lori, I am...
  4. M

    Recent patent; treatment

    Has anyone seen or tried this...? Sorry for the extensive length. Hope I didn't break any rules by copying/pasting it on here. http://www.wipo.int/pctdb/en/wo.jsp?WO=2008021970 Thanks. Mike TREATMENT OF MOTOR NEURON DISEASE, INCLUDING CERTAIN NEUROLOGICAL DISORDERS, MOTOR NEUROPATHIES...
  5. Lorie

    My CVS/ALS Research Fundraiser

    Saturday afternoon I went to my CVS Pharmacy. CVS/ALS Research Fundraiser is from June 8th to June 28th. Me and the Manager Mike, (whom is a friend of my younger brother Neal) made a display table. I did a Bio of Lou Gehrig and had a Black and White picture of him. We put in a black picture...
  6. T

    **Communicate using the most accurate eye tracking technology available**

    I would like to introduce myself, my name is Chris LeBlanc and I am an Augmentative Communication specialist for a company called tobii ATI _based out of Boston Mass. and I cover all of New England. I am writing this because I have evaluated many people diagnosis with ALS recently on our new...
  7. J

    25 year old with symptoms and one failed EMG from two

    Age: 25 Ethnicity: Caucasian Self-Symptoms (up-to 4 months): - Pins needles (although occuring less recently), especially when something is digging into nerve higher up the limb. Of course this is natural, but the effect is much more pronounced than in the past. First symptom noticed (although...
  8. A

    Letter to media regarding IPLEX

    Here I go again, beating the seemingly dead horse of IPLEX. While there is no research available to fully substantiate the claim that IPLEX either slows progression, or reverses symptoms of ALS, I have been able to contact patients that were able to take the drug, and from what I have read...
  9. Lorie

    Update on Telethon Interview

    Angie with MDA of Alabama called me the other day. She said that WJTC will be calling me to set up the interview with us. I told her it couldn't come at a better time. And I told her about myself. She went silent. I told her it was ok. I can't speak as an ALS patient because I do not have a DX...
  10. ZenArcher

    Angela Lansbury on ALS

    Angela Lansbury and Lucie Bruijn Booked on Three National Shows to Launch The CURE ALS Campaign Communications is pleased to announce that our media outreach effort has secured three high-profile, national media bookings for Angela Lansbury and Lucie Bruijn as we launch the CURE ALS public...
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