About Heather Larson and the CureCJD Blog
My name is Heather Larson, and I live in Wichita, Kansas. My mother, uncle, and their uncle have all died of fCJD, mutation e200K. My mission is to use the Internet to raise awareness of CJD and to connect people who are interested in finding a cure for CJD. The biggest mission of all is to help find the cure in any way possible! Feel free to contact me, leave comments, and follow on twitter.com/heatherlarson.
You can also email me at hotwords [at] mac [dot] com.
More about me:
I finished my undergrad degree work at Boston University (online) in March of 2010 and graduated in May 2010. I am currently working as a morning radio personality at Power 93.9 in Wichita as one half of “Hitman and Heather in the Morning” on KDGS. My passions include music of all genres, yoga, writing and finding a cure for CJD. I was raised in both the Bay Area and Scottsdale. A career broadcaster, I’ve been in radio since 1998 and also work in online formats creating content. My latest adventure is writing about social good for HalogenTV.com.
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About Heather Larson and the CureCJD Blog
My name is Heather Larson, and I live in Wichita, Kansas. My mother, uncle, and their uncle have all died of fCJD, mutation e200K. My mission is to use the Internet to raise awareness of CJD and to connect people who are interested in finding a cure for CJD. The biggest mission of all is to help find the cure in any way possible! Feel free to contact me, leave comments, and follow on twitter.com/heatherlarson.
You can also email me at hotwords [at] mac [dot] com.
More about me:
I finished my undergrad degree work at Boston University (online) in March of 2010 and graduated in May 2010. I am currently working as a morning radio personality at Power 93.9 in Wichita as one half of “Hitman and Heather in the Morning” on KDGS. My passions include music of all genres, yoga, writing and finding a cure for CJD. I was raised in both the Bay Area and Scottsdale. A career broadcaster, I’ve been in radio since 1998 and also work in online formats creating content. My latest adventure is writing about social good for HalogenTV.com.
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HI heather, My name is christine lord and I am an freelance journalist who works for the BBC here in the UK . My only son andrew black (andy) died of vcjd on 16th december 2007 aged just 24. I was very interested in your site for many reasons, first I like to say how sorry I am about your family members who have died of cjd, its the cruellest disease.
Like yourself I have channelled my grief into finding answers and am currently pursuing the ministers and officals here in the UK that allowed BSE infected material into the human food chain. My ultimate aim is public and legal responsibility and justice for my son and all victims of vcjd. What struck me is the fact that like many victims of vcjd the first symptoms of which family become aware of maniefest themselves during the autumn winter monts….this was when BSE was at its height in UK cattle too. Also speaking to world experts in prion disease it would appear that sporadic or classic forms of cjd have quadrupled here in the UK, USA and in many parts of the world were UK bse infected material was exported. I have been told by Professor Collinge University College London who ws the scientist that prooved that BSE could cross the specieis barrier to man that ‘ sporadic /classic cjd has increased and it could be because there was BSE infected material in the food chain making it more likely for susceptible people to develop sporadic cjd’ he also said ‘ the next genotype who presents with vcjd may not present with the same syymptoms as the MM group.The symptoms of VV and MV GENOTYPES when suffering from VCJD may well present in a similar pattern to sporadic/classic cjd’ May 2008 I am very interested in the rise of sporadic/classic cjd here in the UK and the USA as I feel they may well be cases of vcjd or have been triggered by the ingesting of BSE infected material. It would also suit the UK government here that figures of vcjd are kept to a minumum.
You can watch the documentary I produced for BBC1 about my andrews last days and my fight for justice here in the UK if you click the link on the bottom of the home page on the website http://www.justiceforandy.com I am about to embark on a uk tour of universities and large organisations to raise awareness and gather support for the campaign. Hope we can work together in finding the asnwers and truth as this will be the best legacy our loved ones could have. I cry for and miss my beautiful boy every minute of the day …his loss is immeasureable…but I am sure with my friends and supporters here in the UK , USA and globally I will get justice for my son and all victims of cjd. best wishes Christine Lord Portsmouth Hampshire UK
Congrats on the website(s) Heather! I think they do a real service to people suffering with CJD so the more the better. I have found that it also helps me spiritually, the son of a CJD sufferer, as well. Good luck! – Mike
Heather,
I’m also a member of CJDVoice having lost my mother to this disease in 2001. I read all the emails, but don’t feel I know enough to really contribute. I’m interested in learning all I can and helping in any small way possible to finding a cure for this awful killer. Keep up the great work you do. Thanks, Jeanie
FYI
See press release at amofix.com re 100% test for vCJD
Heather,
I just came across your blog, I want to start off saying that Im sorry to hear about your mother and Uncle. My father is dying right now with CJD and my aunt did 3 years ago. When my aunt passed nobody thought of being tested and the doctors were telling us it was one and a million but clearly it’s not. I have talked to Dr. Appleby and he’s going to take a look at my dads records. Im not sure why I’m writing you I guess I feel comfort in speaking with someone who has gone thru this. I was also wondering if you know anything about the treatments that are offered. What do they do? I know there not a cure but giving my father a few more months would be better then nothing so maybe he could have his summer with the family. I read in your blog that your back on forth of being tested or not? I know for sure I am. I am 30 years old and have 2 small children and Im scared of passing this gene on to them. Maybe 40 years for now they will have a cure. Well just wanted to touch bass with you. Keep writing it helps.
Kristi,
Hi Krisit,
I am so sorry to hear about your father and your aunt. What nationality are you? I totally understand about the kids. I don’t think I want to have biological children; adoption will be the best option for me. Age will factor into that decision as well. But I also haven’t been tested yet…and I worry about being tested, coming up positive, and not being able to adopt because of it. I don’t even know how real that fear is. But these are the things I think about each day.
CJD is never “one in a million.” This I firmly believe, regardless of whether data exists to back that up. (And it would require a whole other blog post to explain why the data doesn’t exist).
It does appear your family has genetic cases like mine does. Your father and aunt — I assume are siblings? Can you trace your family history to find out if they got it from their paternal or maternal side? I know in my mother’s case, it came from her father’s side of the family. They are Polish. Our genetic mutation is common amongst Poles, Slovaks, Chileans, Libyan Jews…and 1 more I always forget.
Feel free to email me at any time. I know how much it helps to communicate.
My email is hotwords [at] mac [dot] com.
Heather Larson
I found Heather’s blog and read some today. I hope I will be able to reach someone. My sister was just diagnosed with CJD about 2 weeks ago. I am one of 4 sisters. She is 58 years old and it has agreeably been one of the worst things that I have had to watch happen to someone I love. I am the youngest, 52 years old. We spent four days in the hospital at Mayo Clinic in Rochester, MN. with my sister. The disease has progressed rapidly. I and my family want to learn all that we can about this awful disease. It so much like you have all said…no one knew what it was, alzheimer, ms, etc., etc. She went from forgetfulness to not walking or hardly talking and the tremors and not wanting to see any of the family…they thought she had a B-12 deficiency and she does but we knew she was only getting worse and it was extremely devastating! My brother in law has been wonderful, he is bringing her home tomorrow and is going to try and care for her at home with the help of home health care. We are an extremely close family so are all there to help out, at any time we can! I and my family would appreciate any support, advice, help, etc, that you could provide us with! I will definitely be involved in helping find a cure for CJD and for helping this cause in anyway that I can!! Please contact me at any time as we go thru this horrific illness with my sister. Thank-you!
Sharon Mears
Nebraska area
my email address is: smears@cccne.com
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