Friday, November 7, 2008

It's Your America. Here's A Change We Need!

Since they asked, let's spread the word and let our next President know that we need change. We need to find the cause of ALS. That should be very do-able for a country that puts its mind and necessary resources to the problem.

That's change that will save lives and heartache and money.

Is there a more needed change? I think not.

Please submit your thoughts at the link above, and let's put America on a mission to figure ALS out. We have had 12 Presidents since Lou Gehrig died. Let the 13th know that we want to change the prognosis for ALS in his first term. Yes, we can... with his leadership and commitment.

2 comments: said...

10AM to 4PM
U.S. Capitol Building West Front Lawn (handicapped accessible), WASHINGTON, D.C.

ALS Patients Protest Legal Dispute Preventing Access to Life-Saving Drug


Support patients with Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease) now by joining our demonstration to force Genentech, Tercica and Insmed to resolve their legal dispute and release IPLEX to provide symptom relief for this horrible disease. We are calling on all persons with ALS, caregivers, friends, family, media and others to join us in protesting this devastating travesty of justice.

IPLEX is a biomedical pharmaceutical that reduces the symptoms for ALS patients and provides significant relief and improvements, a previously unheard-of achievement although not specifically developed for that purpose. Despite that, on March 7, 2007, a settlement agreement between Genentech, Tercica and Insmed removed IPLEX from ALS patients in the US and throughout the world, with the exception of Italian ALS patients, a cruel settlement exclusion. While Italian ALS patients benefit from IPLEX, the rest of the ALS world suffers debilitation, deprivation and death.

IPLEX is an improved version of Increlex, a drug originally intended to improve severe short growth stature. While both drugs accomplish that to a greater or lesser degree, only IPLEX significantly improves the quality of life for ALS patients. Despite that, persons with ALS lost access to IPLEX and are offered Increlex. After many months of usage, it is clear that IPLEX is the only drug that offers the greatest possible benefit to ALS patients. Nevertheless, it remains unavailable due to the greed of Genentech, Tercica and Insmed, all of whom agreed to this immoral settlement agreement in the name of corporate and personal profit.

Attempts to procure IPLEX have failed, despite continuous contact with the CEO’s of all three corporations, media, judiciary, attorneys, Senators, Representatives and other government officials. Each blames or points to the other. No one takes responsibility for this travesty.
Public demonstration is now the only recourse left to the ALS community.

ALS robs its victims of all voluntary muscles, sentencing its victims to what is called “a brief life in a glass coffin” and death within 2 to 4 years. IPLEX is the only drug yet developed that significantly slows and in some cases reverses this devastating disease.

Our hope is this demonstration will alert the public, our congress and the media to help force Genentech, Tercica and Insmed to release IPLEX. Join us in this critical effort. Help make IPLEX available to ALS patients to improve the quality of their lives, for however long that is.

Scientific and demonstration activity details are attached. For further information, please contact:
Andrea Reimers, RN
Tel: 805-497-9844
Kathy Thompson
Tel: 757-407-9860
Stephen Byer
Tel: 608-698-4200

* Tercica Inc. is currently in process of acquisition by Ipsen SA, France

Anonymous said...

Please join this thread and help us create a petition for an acceleration act for ALS.

With a new president focused on change....we can make a huge difference