Patients w/ALS NEED YOUR HELP!

VIDEO ASKING FOR THE RELASE OF IPLEX...

http://www.youtube.com/v/Qx_7S0eNIZo


ARTICLE BY A FRIEND JAN...

Iplex for ALS/Motor Neuron Disease patients
For every ALS/MND patient around the world to have access to the drug Iplex
Positions:
ALS/MND patients have the right to choose their treatment
Iplex is currently unavailable due to corporate greed
Iplex stalling disease progression in 100 Italian ALS patients

Category:
Health - Diseases and Disease Research

Description:
ALS, ( Loug Gehrigs, Motor Neuron Disease) is neurodegenerative affecting cells in the brain that control essential muscle activity such as walking, breathing, swallowing & speaking. As these muscles aren't receiving messages from the brain they slowly die & waste away with death 2-3 yrs from diagnosis. The cause is unknown, there is no cure & the only approved drug 'Rilutek' offers 2-3 months extra life expectancy. Human (insulin like) growth factor (IGF-1) developed and approved in the USA to treat children with growth problems is proven to be neuro protective & promote regeneration of nerve cells. There has been several studies on IGF-1 to treat ALS with mixed results. 'Iplex' is IGF-1 w/ binding protein 3 (IGF-1BP3). Iplex was removed from the market in March 07 after its manufact. Insmed was sued for patent infringement by pharma. company Tercica/Gennetech. Before the settlement, 8 US PALS (patient with ALS) took Iplex for 3 months. No adverse side effects were seen & all recorded complete disease stabilization as well as improvement. . Main benefits were in swallowing, speech, breathing & weight gain. PAL Ben Byer (director of the doc. film 'Indestructible') whose diet consisted of pureed foods before Iplex was then able to eat steak and burgers. In Italy, prior to settlement, PALS sued their 'Ministry of Health' for access to IGF therapy. The settlement allowed Insmed to still supply Iplex in Italy. However it is not being run as a proper trial, rather an 'expanded access program' with around 100 PALS. ALS is a 'death sentence. The disease wastes away the body to paralysis, artificial respirators & feeding tubes but the mind of remains intact. PALS understand everything that is happening to them. Until this disease affects someone you care about you can’t imagine the devastation as you watch them deteriorating at such as pace. ALS is a rare disease with 35,000 people in USA, 1,400 people in Australia etc. Thus there is not the financial incentive for pharma. co’s to invest due to the small size market. There are research programs on ALS around the world but the time it takes from lab stage to approved treatment is so long that PALS now can’t wait. RIGHT NOW PALS in Italy are on Iplex SHOWING BENEFIT!. Iplex, is made from IGF-1 which is proven to be neuro protective & regenerative. It is APPROVED for use by the USA FDA to treat children with growth problems demonstrating a level of safety. This CAUSE is about getting no.s & support for PALS & their BASIC RIGHT to a treatment that could slow their demise. Please support us in pressuring Tercica/Gennetech & Insmed to make Iplex AVAILABLE to PALS.

My friends & family you have asked Lori & I how you can help...here's your chance, please write letters on my behalf insisting that Insmed immediately resolve their patent dispute and release IPLEX to all PALS. I have included the names & contact information as well as a sample letter that I sent out. I have talked to the 8-10 PALS/or their care givers that were on IPLEX before Insmed's lawsuit which they all overwelmingly confirmed that Iplex improved their symptoms & slowed down the disease. Coupled w/ the Italian governments suing Insmed for the access of Iplex for their 100 PALS the last several years and data from a neurologist in Italy confirming the efficacy of Iplex in their patients I have embarked on joining forces to gain access to this therapeutic. Please help us flood their emails and mailboxes with our requests for the release & access of Iplex.
Thanks so much for your help in this David vs. Goliath battle!

Love Eric & Lori



Dear Brothers and Sisters,

We ( Team IPLEX ) are humbly requesting help from any and all supporters . Please Review the Attachment that I have provided.
You can (cut and paste talking points from the attachment or you can just cut and paste the entire document as is ) send the same letter to each recipients -- just don't forget to change the address name and salutation

But Please Take Some Time, out a Help Our Cause . Remember if you write what letter per day for the next eight days you've covered all of the Ismed Top Brass.

Remember we need to emphasize that we are - Appealing for the release of IPLEX for the benefit of our family members, neighbors , brothers, sisters, fathers, mothers , best friends, etc. .

We (TEAM IPLEX ) Have Successfully Sent about 65-75 letters to all of the executives, board of directors, researchers, investor relation contacts , of each of the companies involved. But We Realize That 65-75 letters are simply Not Enough to Sway Anybody . Therefore we Really Need Your Help. If We Could Get Just 600-700 Letters, to Each of These Corporate Bigwigs , I Truly Believe That Things Would Start to Loosen up . What we're really aiming for is 7000 letters , but we'll be happy with 700 to each and every person below .

Thanks Team Iplex

INSMED:
Dr. Geoff Allan, PhD - president & CEO
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Steve Glover President Insmed Therapeutics
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Doug Farrar Vice President Insmed Therapeutics
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Kevin Tulley VP and Chief Financial Officer
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Glen Kelley, Vice president
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Anne Smith, PhD Director of Clinical Research
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Christie ONeal
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235
coneal@insmed.com

Investor Relations for Insmed
Brian Ritchie (I do not have his address in New York)
brian.ritchie@fd.com


SAMPLE LETTER I USED BELOW:

Christie O’Neal
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Dear Ms. O’Neal,

I am writing to request that you support - the release of IPLEX as a therapeutic for people suffering with ALS. Negotiations need to be initiated by all parties involved. This is an urgent plea to your moral consciousness so please do what ever it takes, to give myself & others an opportunity - the same opportunity your company has afforded the Italian government for their 100 patients suffering from this deadly disease.

Although there are many variables in this disease, there is only one constant -It Is Always Fatal –an average of two to five years following diagnosis. All of us are condemned to die, or worst, to watch those we love so dearly die, and just because people can't figure out how to turn a patent dispute into a win-win deal.

As you probably already know, ALS is the cruelest of diseases. As the disease progresses, its victims become trapped inside a body they no longer can control; unable to walk, talk, chew, swallow, eat, and eventually breathe. As you probably also know, there is no effective treatment. We (Team Iplex) believe your product; Iplex (IGFBP-3) is far ahead of the field, as a therapeutic tool, to slow progression.

Under a commonly used and legal process, many PALS, including myself, have had our physicians request the use of Iplex (for emergency use) directly from Insmed. We are always told that court proceedings and settlement terms forbid Insmed to deliver this Life Saving Therapy. WHAT? Doesn't there seem to be something fundamentally/ morally wrong with that statement? Insmed will always respond that (per court order), that their competitors make a suitable alternative called Increlex.

Ms. O’Neal, Increlex is not the same as Iplex, and has little, if any, efficacy against ALS, Increlex fails to produce the same results as Iplex for many reasons, including dosing, half life, specificity of action, etc. Simply put, Genentech/Tercica has manufactured an inferior product than IPLEX.

We implore of you Ms. O’Neal, as a woman of power and influence, please assist us in the timely release of Iplex to ALL PALS. Genentech, Tercica have ordered all of us (Pals) to an untimely and premature demise. But you can show us the way to win this battle, there are many amongst us that are doctors, lawyers, nurses, etc. that will definitely follow any trail that you leave. Just put yourself in my shoes, I’m only 38 years old. My wife and I have been married 13 years. We have two young children, what would you do if you had a very short hourglass and the sand was shifting very fast. Please Help, Please Negotiate.
Respectively,

Eric J. Fox
Veteran/PALS/US Citizen
Info@ericfox.us
616-457-5826