We're a pretty tight-knit group. The IS community. We blog. We email. We post to forums. We chat on the phone. We friend each other on FB. And so on.
Some of us have the very special opportunity to meet. And deliver an in-person hug that spreads from the IS changed spot in our souls right through to the squeeze of our arms. It is a very moving thing...let me tell you.
Mike Bartenhagen is one of those IS friends I have had the privilege of meeting. He was the parent liaison on the FDA panel during the Vigabatrin hearing. I was the Epilepsy Foundation parent representative testifying before the panel. Jen Smith , advocate extraordinaire, was also in attendance. There to support both Mike and myself and to represent her son ,Austin, who achieved seizure freedom on Vigabatrin. For me...it will always be one of those memories. The kind you pull out on a rainy day to feel your heart warm.
I'm posting below the email Mike sent to Alanna Peer (Development and Events Coordinator - Child Neurology Foundation) regarding the upcoming so-called IS Awareness Week:
If you have an opportunity I would encourage you to look at the following site:
It shows insider transactions for Questcor, in other words it is a disclosure as to when Questcor employees or board members make Questcor stock transactions. Steve Cartt is the Executive Vice President for Questcor, notice that since the price increase was announced two years ago he has made a profit of close to 4 million dollars. If you are unfamiliar with Acthar it is a drug that has been around for well over 30 years. Since the price increase 2 years ago there have been no improvements to the medication, no more kids have been cured of IS but the employees at Questcor have made out very well.
If your organization truly wanted to do something to benefit those children with Infantile Spasms you could further some research into Synacthen and Prednisolone, both are alternatives to Acthar and there have been studies to show both can be as effective at a fraction of the cost, this would be important information to get out to your members.
Most in the Infantile Spasms community see the IS Awareness week for what it is, a dog and pony show that gives Questcor a forum for some positive PR. I question if it is even ethical for the CNF to partner with Questcor in such an event because as I am sure you know Questcor does not have a product that is approved for Infantile Spasms.