Cure CJD

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

About Heather Larson and the CureCJD Blog

Here I am in May 2012 at the brand new UCSF Neurosciences building in Mission Bay with Dr. Michael Geschwind. 

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 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!

Learn more about some of my past activism here. 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. My passions include music of all genres, running, donating time to great causes, 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. When I moved to Kansas at the end of 2010, I was writing about social good for HalogenTV.com.

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14 Comments »

  1. 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

    Comment by CHRISTINE | October 1, 2008

  2. 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

    Comment by M. Childress | October 1, 2008

  3. 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

    Comment by Jeanie | October 1, 2008

  4. FYI

    See press release at amofix.com re 100% test for vCJD

    Comment by David | December 20, 2008

  5. 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.

    Comment by Kristi | March 15, 2010

  6. 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

    Comment by CureCJD_Heather Larson | March 16, 2010

  7. 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

    Comment by Sharon Mears | March 31, 2010

  8. my email address is: smears@cccne.com

    Comment by Sharon Mears | March 31, 2010

  9. Registering for updates

    Comment by Ryan H | June 3, 2011

  10. Hi Heather! I just stumbled upon your blog after doing some googling. I’m so sorry for your losses. I too lost my mother to CJD, but assume your experience was even more difficult because it has affected several family members. My mother had sporadic CJD.

    I’m working on a 5k event that I’ll host next spring to help raise money & awareness for CJD. On my website I’ve created a section to memorialize those who lost their lives to CJD. I would be honored to feature stories on our loved ones if you’re interested, check it out: http://sk5kraceofhope.com

    Keep blogging, I love your stuff!!

    Comment by jenniferjohnson1011 | August 31, 2012

  11. Hi Jennifer, I am sorry to hear about your mom. I find it hard to decipher which one of us has had a “more difficult” time with a CJD loss (or 2+) since every experience is unique and stressful in its own way. I often think that the people who watch loved ones suffer for 18 months or longer have it the worst. Sometimes I think it’s easier to be in a family faced by the genetic issue (and hence mortality for all of us) because at least I don’t have to question “how did my mom get this?” At least I know how my mom died, how she acquired the disease, and I can have some peace with that. ~Heather Larson

    Comment by CureCJD_Heather Larson | September 3, 2012

  12. Hi Heather – My mother was diagnosed with CJD just this past Friday 10/5/12. This has been very tough for our family. She first got symptoms about 4 weeks ago and they ran every test that could think of while she spent over a week in the hospital in Tulsa OK. She was then referred to the Mayo clinic in Minnesota and we got her an appointment several weeks later. It took a week for them to actually diagnosis this once we got her the appointment at the Mayo clinic in Minnesota. I’m still confused on what this is and am just at a loss for words. I would appreciate any input as to what we might expect in the weeks to come. Thank you.

    Comment by Jerry Kennedy | October 9, 2012

  13. It’s a shame she had to go through so much and be sent all the way from Oklahoma to Minnesota in order to receive a diagnosis. This is exactly why we need to have a clinical diagnosis available in every hospital around the world with doctors who are better educated about CJD. I am sorry to hear about your mom. I was going through the exact same thing eight years ago this week. Today is the anniversary of the day I last saw my family together and getting along in the same room. Yesterday was the anniversary of the day my dad took my mom to the emergency room — we never brought her home ever again. So many bad memories for me this time of year. I hope you and your family can support each other and be strong together during this time.

    Comment by CureCJD_Heather Larson | October 9, 2012

  14. Hi Heather. I believe we may have talked a number of years ago … or it may have been Amanda. My recollection is fuzzy. My name is Jeff Zadzilka from Ohio. Your mother, Phyllis and your Uncle Dennis were my cousins. Your grandfather, Bernie, was my dad’s closest brother. My father was Raymond. Uncle Wally who died of CJD in Ohio was the first in the family that we know of that died so suddenly of this disease. My father was able to visit him when he got sick once or twice before doctors thought he may be extremely contagious and then quarantined him. Not quite knowing where the illness came from, they took his ashes. My father didn’t know anything past that. Wally was a parachutist and parachutist trainer in the military service. He was also a bodybuilder and in great shape until CJD hit. His ex-wife and four kids I think (one son and three daughters) lived in Washington State. There was speculation he contracted the disease from being overseas or from deer meat since he was a bow hunter in Washington. It wasn’t until Dennis and then Phyllis died of PJD that we realized it was genetic. None of the other brothers and sisters contracted the disease (I believe 13 of them). No other relatives that we know of had CJD except for Dennis and your Mother. I grew up with them until they moved to Arizona. Many picnics. Uncle Bernie had a very large yard and that is where all the family gathered several times a year except winter. Your Mom was closest to my sister and Dennis closest to my brother Dale who died of kidney disease at age 43 after 19 years on dialysis. I fought kidney disease for 30 years before I went on dialysis in 2004, got a transplant in 2009 which failed in 2012. I am now back surviving on dialysis trying to not let it overtake the rest of my health before I can get another transplant. I was just a bit older than Diane. Diane stuck by my side at most of the picnics. The ancestry is vague since there wasn’t much talk of it. Their father was Vincent Zadzielka and mother, Wladyslawa (Lottie) Zadzielka (Zielinski) which I am guessing you have already tried to research. Perhaps you know something about why CJD is triggered in some of our family and not the case in so many others. Are the rest of us carriers of PJD or does the DNA get changed or erased after many marriages? I have three grown children and seven grandchildren who I worry about with both the kidney disease and CJD, also RP, retinitis pigmentosa. My two daughters are legally blind with a mutation of RP. Doctors so far are saying that with the RP and the Kidney Disease as a genetic disorder, it takes just the right set of parents with the wrong DNA to have this suddenly occur in families that saw no cases of these in their known family historically. None of my kids or grandkids have the kidney disease at this point. So why Uncle Wally and not the others? Why Dennis and your Mom and not Diane? When last I talked to Uncle Bernie, who I saw passed earlier this year, Diane had some personal problems plus some domestic abuse situations. I was sorry to hear of this. My email is: coach01@ameritech.net if you want to reach me.

    Comment by Jeff Zadzilka | November 28, 2015


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