Infantile spasms is a harsh disease.  There's few places to find any tangible information, and even including present company, blogs are at best a personal specific saga for a disease that manifests itself differently in every child.  Recently, CBS News didn't consider fact checking the name of the disease prior to featuring a parent who deals with the disease day in and day out on the evening national news.  For sure, CBS is at fault for not checking the correct disease name, but we mostly toil invisibly taking care of our afflicted children and omissions like this cut deeply.

The Child Neurology Society has an annual meeting, it sounds like an amazing environment for neurologists to get together, share treatments, discuss difficult patients, and gain some insight to the various issues that are unique to neurological issues in our children.  To subsidize the event, they have corporate donors, drawn throughout the pharmaceutical and medical industries.  Meeting sponsorship is common for meetings such as this- the costs of doing business are immense.

This year, the same as last year, Questcor of ACTH fame, is a major sponsor of the event.  In fact, this year, Questcor and the Child Neurology Foundation have announced the creation of infantile spasms awareness week.  This week is supposed to take place October 11th through October 17th.  I'd like to consider myself fairly well educated on the disease, I think we all are as parents of infantile spasms sufferers.  If we don't, treatments and medicines may not be tried, and it's not fair for our children if we just go with the flow.

I've attempted to contact the public relations company as listed on the press release by phone and by email with no success- they won't return any of my communications.  What's the agenda for infantile spasms awareness week?  Questcor frequently beats the drum of raising awareness and raising the quality of life for IS sufferers.  Advocating infantile spasms awareness at a neurology convention is like promoting pork products at a barbecue convention.  The audience you're promoting to already knows about the disease!  

Please, do have an infantile spasms awareness week.  We've all already been diagnosed, but you can help the next generation of IS sufferer.  How many of our children would have been diagnosed sooner if our pediatricians were aware of the disease?  I agree early and aggressive treatment of IS can affect the prognosis of the children that suffer from it, but neurologists are not who you need to tell.  The message needs to be heard at all levels of child care, medical and not.  Tell pediatricians, tell parents, tell daycare centers.  Don't focus your efforts on educational materials for parents and neurologists so your medicine is prescribed- tell the people who encounter the disease first.

Parents of IS kids or for that matter, bloggers anywhere- feel free to repeat this entire text in your blogs.  The information point of contact for infantile spasms awareness week is Mr. Mark Leonard (mark@reachthenextlevel.com) and his phone number is 847-267-9660.  If you choose to contact Mr. Leonard, be polite.

-Mike

Marissa’s Dad

http://www.marissasbunny.com 

Phew.  That was a mouthful.  Fellow readers, if any of you wish to repeat this message on your blog or in an email, feel free to do so, in it’s entirety (minus this paragraph, of course).  Please, help me get the CNS and Questcor to give us more than lip service for awareness of this horrible disease that steals our children from us.

Addendum 9/24/09 7:24 PM:

I’ve just spent almost an hour on the phone with Mark Leonard- I’ll be posting more about it in the morning. 

Addendum 9/25/09 11:17 AM:

General details of conversation posted here.

Addendum 9/25 5:25 PM:

Response from the CNF and rebuttal posted here.

Addendum 10/2 1:45 PM:

This is it, with any luck.  Post four in the trilogy here.