Long time, no blog. Here’s why I took some time off from blogging about CJD.

I took some time off from blogging this year (nearly four months now) to let some ideas marinate, among other things. I do have a great deal to write about for you. This blog and the many CJD families have not been far from my mind at all. Quite the opposite.

CJD is something I think about daily. 

 

I visited UCSF recently and took part in their study and have continued to network with CJD families all over the world thanks to the magic of the Internet — this blog, Twitter, Tumblr, Facebook, email, etc. I think that I have some real hope for this first time in seven years of doing this and not just optimism.

I know from reading your messages that you come to me looking for hope.

No one is coming to my blog and then sending me emails about anything negative. We’re all in the same boat looking for answers and that boat may have neither oars or a compass, but we are collectively heading down the same river together. We all want to find answers, hope, and the best treatment for our loved ones as well as ourselves.

I started blogging about CJD after my mother died of CJD in November of 2004. My initial goal still stands and that is to create a place online that shows this disease is happening to people and that is deserves attention, advances, and a cure.

If you don’t speak up, you disappear. 

I also wanted to be able to fearlessly share my experiences, thoughts, feelings, emotions, and knowledge. This is why I posted the quote about courage with this post. It takes courage to speak up like I do, which is something that comes naturally to me as a writer and radio personality. I have always had something to say and desired to share my experience with you. This didn’t stand out to me as anything but normal when I began doing this. But after receiving many different emails over the years I have realized there is a lot of fear surrounding the discussion of CJD. I think many consider this to be a taboo subject.

So it’s becoming a new goal of mine to keep sharing so that others may also have the desire to share. CJD does not need to be taboo. There does not need to be a stigma, shyness, or shame surrounding this disease. There is no reason to be afraid of a CJD patient; give that person your love and support and especially support the loved ones who take care of that person.

The more we talk about our experiences as CJD families with friends, neighbors, coworkers, churches, doctors, nurses, health care providers — whoever — the more we will make others aware. The more we make others aware, the more they will care and the easier it will be for the rest of us to get funding to research institutions who need it.

I want this blog to highlight the people who are doing something about this disease. There are many people working towards the cure for CJD and they deserve to be written about. The only way to solve this problem of prion disease in the world is to find the cure. I hope my courage will infect others who will also be inspired to join the fight.

~Heather Larson

On Twitter @heatherlarson 

email: hotwords (@) mac (dot) com

(8/21/2012 edit: No, the irony of using an Oprah Winfrey quote above on a blog about prion disease has not been lost on me. I am well aware of how Winfrey’s failures have castrated the American beef consumer’s rights while only bringing us Dr. Phil. Thanks again for that, Oprah! She’s got some good inspirational quotes though). 

Please participate in Footwork For CJD

This is an event this weekend in West Virginia put on by my friend, Nikki Bland, who also lost her mother to CJD.  If you visit the Snively family’s blog, you can see a cool video they’ve put together of last year’s event.  Even if you aren’t in West Virginia, you can still donate to the cause either through Nikki or the CJD Foundation.  If you write a check to the foundation, please write “Footwork for CJD” in the memo so they’ll know you’re supporting the West Virginia walk.  You can also donate online at the CJD Foundation’s website through paypal.

Here’s the walk info:

JOIN US FOR A DAY OF REMEMBRANCE AND AWARENESS!

WHO:

The Creutzfeldt-Jakob Disease (CJD) Foundation, with the event organized by Nikki Bland and family

WHAT:

A walk where you will collect pledges on a flat fee basis for your participation.  The amount raised is up to you!  The day will begin with a remembrance lap.  Learn more about Creutzfeldt-Jakob Disease and meet families who have been affected by it.

WHERE:

Duvall-Rosier Field located on the campus of Fairmont State University, Fairmont, West Virginia

WHEN:

Saturday, November 14, 2009 – registration at 9:00 a.m. and walk to begin at 10:00 a.m.

WHY:

To benefit the CJD Foundation’s HelpLine, the only HelpLine for CJD patient and family support in the United States, The Annual Family Conference in Washington D.C, and The CJD Foundation Family Discretionary Fund.

Please contact Nikki Bland for more information at bland_nikki@yahoo.com or curecjd@gmail.com.  You can also visit the family’s blog at www.cjdhope.blogspot.com for more information.  To learn more about Creutzfeldt-Jakob Disease, visit the CJD Foundation’s web site at www.cjdfoundation.org.

You can also make donations payable to:

CJD Foundation, Inc.

PO Box 5312

Akron OH 44334