Friday, September 6, 2013


How many of you watch The Today Show? How many of you watched this week as Maria Shriver did a 5 part series on Alzheimer's Disease? Now how many of you know what Alzheimer's is? Know someone who has it? Know families struggling to cope with it? Is is really possible that no one knows what Alzheimer's Disease is in this day and age? Did it really take a 5 part series to "raise awareness and educate" us about it? Alzheimer's is important to Maria Shriver because her father died from it. I get it. But she not only is a member of one of this country's most powerful, influential and wealthy families, but she works for NBC, so getting them to give her that much airtime was likely not hard for her to do.

Now, I don't like to ever say one disease is more important than another. I wish for a world where there is no disease; no Cancer, no Alzheimer's, no Heart Disease, no HIV/AIDS, no Parkinson's no Alzheimer's and no IC. I lost my Grandmother to Alzheimer's. I watched her disappear before our eyes years before she died. I always say that I lost my Nana years before her death. She was not in there. That is no way live and no way to die. My Aunt died of Breast Cancer. We watched her suffer through mastectomy, chemo & radiation all to lose her battle several years later. That is no way to live or die either. I have lost both Grandfathers and an Uncle to heart disease; all before the age of 65. I have been personally impacted by these diseases and could never diminish how significant they are and how many other people are impacted by them too.

However, watching this 5 part series, Ms. Shriver was able to talk to numerous celebrities that were working to raise funds for research and awareness. She has access to celebrities and the platform to devote this kind of attention to an illness that has impacted her directly. So who can blame her for taking advantage of that access. It is a good cause.

But who will speak for the millions of IC patients suffering every day? IC is in desperate need of research funding to better understand its cause(s) and discover better diagnostic tools and better treatments.

Only we don't have a Maria Shriver with IC who can get on The Today Show - and not just for a 5 or 10 minute segment, but for a truly in-depth piece on IC like the one Ms. Shriver did for Alzheimer's!

And that's what IC needs. We have the the ICA, the best advocacy organization out there. But they need more money to be able to do the kinds of work it takes to get access to national media attention, exposure and funding opportunities.

According to the story that Ms. Shriver did: "more than 5 million Americans are living with Alzheimer’s disease and that number is expected to jump to 13 million in next 35 years."

35 years to hit the 13 million mark. Today, right now, 4-12 million people are suffering from IC. Today! Not in 35 years! Right now!

So, who will speak for us? Where is our "Maria Shriver"? We don't have one. So until we have one, it is - I believe - the responsibility of IC patients everywhere to rise up, speak out, help fund raise, spread the word, write letters and advocate for ourselves. Until the day comes where we have access like I saw given to Ms. Shriver this week, then it is up to us suffering from IC to do all we can to try to raise awareness, educate and support the important work of the ICA.

The ICA speaks for us. Let's help them. Otherwise we have no room to complain. It's like voting. If you don't vote, you don't get to complain. If you don't do all you can, within your abilities, to help raise IC awareness, then you can't complain about the need for more of it.

Who will speak for us? We will. The IC Community will raise our voices and stand up for the millions with IC. Eventually, we will be heard!

No comments:

Post a Comment