Dear EMPOWHER Friends:
Please support efforts to help ALS patients like my husband. You may not be aware but thre are thousands of veterans who are facing the diagnosis of service-connected ALS. My husband, a 24-year Navy CAPT who retired in 2005 was diagnosed two years ago with this horrible debilitating and uncurable disease. Life expectancy is 2-3 years at the most and the military veterans are hit with a very aggressive form of the disease. This past month, Congress approved to recognized the diagnosis as 100% disability and service connected beyond the Gulf-War. We may never know the cause but Gulf-War vets are hit with higher incidence than other veterans. In addition, there is an epidemic proportion of MS among pilots who served in the first Gulf-War.
As a caregiver, spouse, mother of two young children and having had to stop working all together to care for my husband's needs 24/7, I have found our own personal experience with the VA deplorable and uncaring. The worst experience in my whole entire life especially when one serves his/her country as my husband and I did. Caring for PALS is time, financial and life consuming and also has effects on health for those love ones who care for them (stress, anxiety, lack of sleep, poor nutrition, etc). I recently learned about a drug that could save or extend my husband's life but due to a patent law suit between 3 companies, this product is NOT available to Americans. Why does our medical and legal system allow this travesty? I am willing to lose our home and life savings to get access to this product if that allows PALS to slow down or reverse the disease, wouldn't you?
I need you to support PALS efforts to help us access IPLEX and make known what is going on. The government needs to make every effort to force the phamaceutical companies (involved in IPLEX law suit) arrive to an agreement that will allow IPLEX to be available in the USA so veterans and other PALS can access this live-saving drug. There is no cure or treatment as this time for ALS and the only thing that has shown some positive results is IPLEX although no "formal" clinical trials were documented, there is plenty of evidence and court documents that indicates IPLEX (IGF-1 + BP3 combined) has positive results among those who used it before the law suit stopped its availability in the USA. The Italian government was able to secure purchasing the drug from the US and many PALS from Italy are showing the benefits of its use.
We are protesting the action of the pharmaceutical companies involved (TERCICA, GENENTECH and INSMED) this coming Veterans' Day. You have an opportunity to share this information friends and family or any one of influence to ensure that our efforts yield results, get media attention, government (FDA) attention, and put pressure on the companies to release IPLEX in the US market.
We are marching in DC on Veterans' Day for a reason! There are close to 5,000 veterans suffering this disease along with their families in addition to many other ALS patients across the world. I have copied and pasted a plead video by one of our veterans for your view http://www.youtube.com/v/Qx_7S0eNIZo
I am also including the website to my husband ( www.gasarthome.com ) who had hoped to dedicate his life after retirement to his art passion but his dreams had been shattered and he is now 100% paralized, unable to talk, eat and breath on his own. He is on a ventilator machine, uses a communication device by blinking his eyes and is fed via tube. Despite all of this, he wants to live long enough to see the children graduate from high school at least.
Help me distribute this information to friends in the DC area or those who may want to attend the march. If you have time please also write to these two companies who refuse to settle and allow the sell of IPLEX in the US!
TERCICA:
Dr. John Scarlett, MD Chief Executive Officer
Tercica, Inc.
2000 Sierra Point Parkway
Brisbane, CA 24008
Stephen Rosenfield General Counsel
Tercica, Inc.
2000 Sierra Point Parkway
Brisbane, CA 24008
Investor and Media Contact:
Tercica, Inc.
Fredrik Wiklund
Senior Director, Investor Relations &
Corporate Development
650-624-4992
[email protected]
GENENTECH:
Arthur D. Levinson, PhD
Chairman, CEO
Genentech, Inc.
1 DNA Way
South San Francisco, CA 94080-4990
Phone: 650-225-1000
Fax: 650-225-6000 [email protected]
Gary H. Loeb Associate General Counsel
Genentech, Inc.
1 DNA Way
South San Francisco, CA 94080-4990
650-225-1715 direct dial 650-952-9881 direct fax
[email protected]
Carmen Orton
Senior Specialist,Investor Relations
Genentech, Inc.
1 DNA Way
South San Francisco, CA 94080-4990
Thanks and God Bless you all
PALS ANGEL
URGENT!
FORWARD THIS IMPORTANT INFORMATION TO ALS PATIENTS, FAMILY AND FRIENDS NOW!
BE THERE IF YOU CAN! YOUR SUPPORT IS IMPERATIVE!
WITH YOUR HELP WE CAN SUCCEED! ONLY 2 WEEKS LEFT!
FOR IMMEDIATE RELEASE
LOU GEHRIG’S DISEASE DEMONSTRATION!
TUESDAY, NOVEMBER 11, 2008
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
GENENTECH-TERCICA*-INSMED: RELEASE IPLEX NOW!
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.