Let Pfizer know that you want a cure for Canavan!

Pfizer Pharmaceuticals now owns twenty two years of research that led to the development of new technology to treat patients. This new and improved gene therapy will target the myelin making cells in the brains of children and young adults and enable doctors to deliver a customized medicine for Canavan disease. This technology was largely funded by families of affected children, charitable organizations, and the NIH. 

Pfizer has nearly unlimited resources available to move this science to a clinical trial and ultimately develop a one-time treatment to potentially cure Canavan disease. This type of funding has never been possible for Canavan disease research before.

We are excited about the possibilities that massive financial support can bring with it to help patients. But Pfizer's interest in Canavan disease and their initial investment to acquire our technology is only the first step. Now they need to hear from the patients and their families. We need to ensure that this technology doesn't sit on a shelf while our children continue to die.

It was this sense of urgency that first united our families and organizations to help get Canavan as far as it has, but please don't let it end here. We have come too far and fought too hard to stop now. Pfizer now holds the power to decide the fate of years of research and hard work by determining the order, and even what diseases they decide to set on course for a clinical trial.

They will listen to patients and the people who care about them. Canavan is fatal and progressive, time is essential and Canavan disease must be made a priority. We are on the radar but we need to become a top priority! Our children cannot speak for themselves, please be the voice of our children and ask Pfizer to make Canavan a priority for treatment.

Dear Ian C. Read,


I am writing to you on behalf of the children and families affected by Canavan disease. The technology to save our children has been acquired by Pfizer through the purchase of Bamboo Therapeutics. We are now relying on you to move ahead quickly and put Canavan on a direct path to a clinical trial. Canavan disease must become a priority because it is progressive and fatal.


I realize that this is primarily about money and profit. Insurance companies will continue to spend millions of dollars per child keeping our profoundly disabled, medically fragile children alive for years and possibly decades until you offer them a cure.


There are also secondary costs associated with Canavan disease. Caregivers and parents are much more likely to require ongoing medical care for chronic pain and injury due to the physical demands of taking care of disabled children and young adults. A one-time treatment is a much better and far less costly alternative for insurance companies.


Other opportunities for profit include your ability to use the perfected technology and treat millions of people suffering from more common related diseases such as ALS, Alzheimer's and Parkinson's. You will also be granted huge tax incentives if you advance this technology and help patients living with Canavan and other rare diseases.


If you are concerned about helping sick people and interested in developing drugs to improve their lives then please help these amazing children, they are a gift to the families who love and cherish them. 


Thank you!


Sincerely,


Ilyce Randell


Patient Advocacy


Canavan Research Illinois


 

Update #64 years ago
They have heard our voices and we will be having regular updates. I'm closing this petition because we will be able to have very open communication moving forward. I honestly feel that the two new representatives I'm going to be working with at Pfizer have heard our concerns and answered appropriately. Thank you to everyone who signed, and I let them know that I will be closing this immediately following our call today.
Sincerely,
Ilyce Randell
Update #54 years ago
I have a meeting scheduled with two different reps, so hopefully it's good news. I'm keeping the petition open because we still need more signatures so please keep sharing!
Ilyce
Update #44 years ago
Almost three years has passed and NOTHING changed so I reopened the petition!
Update #37 years ago
Meeting with Pfizer to address concerns! Reps from Pfizer/Bamboo, scientific community and Canavan organizations will be present. This will begin open discussions of how we can help the kids. They are being extremely responsive and we appreciate all your help in letting Pfizer hear how important this issue is to so many people. I am temporarily halting the petition in the interest of having a friendly first meeting. Good job everyone and thank you for your support!
Ilyce Randell
Update #27 years ago
ATTENTION ALL CANAVAN FAMILIES: To increase signatures we’re adding stories of affected children and featuring their picture. We’ll rotate the featured child & try and get to each one! I am requesting a photograph of your child and a few sentences about your personal story. This is only if you wish to be included. To add your child please follow the format used for Max and email your picture and story to IlyceRandell@gmail.com. Thank you!
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