Cure CJD

Heather Larson's experiences in helping find the cure for CJD

What a pleasant surprise — a friend donated to UCSF in my honor!

I just think this is really cool. I’ve been beating this drum for nearly eight years now; it’s hard to believe it’s gone by so fast. I love to be an advocate for CJD patients and their families. I love to raise awareness about the disease and its surrounding issues like the need for a cure.

So why not for my birthday this year ask all my friends on Facebook to donate to UCSF so there’s more money for research? (I paid my way to San Francisco and back; UCSF can’t afford to pay for that. I also paid for lodging so as not to tax hospital resources with an overnight stay).

I just posted one simple status update on Facebook and — BOOM! Someone took me up on it! I have no idea how much they donated, but since they specified that they donated in my honor, I received a nice letter in the mail today from UCSF. If you donated online and didn’t specify it was in my honor, thank you. You’re awesome. =)

I’m happy I can make someone care with a Facebook status post, a blog post, a simple conversation during a chance meeting… It really does take a grassroots effort to educate one person at a time. Once in a while you get to speak to an entire auditorium, a classroom, a group of people, or at least more than one person at a time. Sometimes you reach many. Sometimes you reach one. But each of those moments is a breakthrough in understanding and totally worth it.

There are many ways to become an activist and/or advocate — whichever word you prefer. I urge people to learn more about the research and to participate in it. I’m a writer and media professional so I have found different ways to be creative over the years in getting the word out to people.

A friend of mine started a walk in her city. You can ask for donations to UCSF on Twitter or Facebook. You can have a bake sale, make a t-shirt, sell bracelets, buttons, or magnets. You can write letters to your representatives. Create a blog. Write a book. Write a poem or a song. Contact the CJD Foundation and see if they need help or know of something you can do for them where you live. Start a support group. Make a Facebook fan page. Create a YouTube video. Speak at a school. Ask for help. Talk to your friends.

There is no need to suffer in silence. In eight years, I have never once believed this should be a taboo subject or something to feel ashamed or embarrassed about. CJD is a terminal neurodegenerative disease. It deserves attention and a cure. Fight on.

~Heather Larson

@heatherlarson on Twitter

hotwords [at] mac [dot] com


August 28, 2012 - Posted by | Uncategorized


  1. nice work Heather !

    Comment by flounder9 | August 29, 2012

  2. Thank you, sir! =)

    Comment by CureCJD_Heather Larson | August 30, 2012

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