Tuesday, October 14, 2008

LOU GEHRIG’S DISEASE DEMONSTRATION!TUESDAY, NOVEMBER 11, 200810AM to 4PM U.S. Capitol Building West Front Lawn (handicapped accessible), WASHINGTON ,

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 signif icantly 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
Email: andyvaughn@roadrunner.com
Tel: 805-497-9844
; Or
Kathy Thompson
Email: quiltersdreambatting@juno.com
Tel: 757-407-9860
Stephen Byer
Email: bsbyer@mhtc.net
Tel: 608-698-4200


Michael Peler said...

All else has falled , personal responsibility has been set aside and we've been left to die . We've not given up nor will we . Show up and be counted
demand responsibility . My wife , your wife ,your mom or dad , sister or brother your friend or mate
We've done nothing to deserve this and are only asking for a chance to let IPLEX make a difference

Michael Peler
ALS Advocate

Michael Peler said...

This is Michael Peler again , in my first comment I some how forget to mention son or daughter among our special group fighting ALS . I also want to personally thank Steve Byer who continues to fight for all of us living with ALS even though he &
has family have paid the highest price losing there
son Ben to this night mare called ALS .

Please show up and be counted . We need IPLEX before its to late .

Michael Peler
ALS Advocate