UCSF Research Team Tries To Unlock Lethal Neurological Disease

SAN FRANCISCO (CBS 5) – Creutzfeldt-Jakob Disease, or CJD, is a devastating disease that takes away your life before it eventually ends it. A group at UCSF is one of the few teams in the country working towards a cure.

“We call CJD the great mimicker because, particularly early on, it looks like a lot of other neurological or psychiatric diseases,” said Dr. Michael Geschwind of the UCSF Memory and Aging Center.

Dr. Michael Geschwind describes the difficult to diagnose affliction as similar to Alzheimer’s, but in fast forward.

“Most people only live less than a year with this disease from first symptom to death. So it’s very rapid. I’ve seen some patients who have died in a matter of weeks,” he said.

The decline is constant but unpredictable. Most doctors have never seen a case of CJD – only about 300 people are diagnosed with it each year in the U.S. There are three different kinds-genetic, acquired and sporadic, has which means they don’t know how someone gets it. Because CJD is so rare, the research doesn’t get the money of AIDS or Cancer.

(© 2010 CBS Broadcasting Inc. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed. The Associated Press contributed to this report.)

  • Claudia Leyva

    Excellent video… my father just died of CJD his name was Jose A Leyva . We must fight for a cure. We need funds, we need support, we need a cure. I live in the L.A area we have a group geting together to raise awarness and raise money for research. Please if there is anything you can do to help us. My e-mail is cleyvas@hotmail.com.

    And Gary God bless you and your family I know what you are going thru.

    • Edna Boroski

      Thank you for this report. My husband died of CJD, too; and there’s been too little attention paid to stopping it. It would seem that until the news media covers someone high profile dying of this disease, that it won’t get the attention it deserves regarding more funding for research and a cure. See http://www.cjdfoundation.org for more information. Again, thank you so much for telling the CJD STORY.



  • Carmen Garcia

    Thank you for airing this. My heart goes out to all those affected by this disease. I pray everyday for that there will be a cure. CJD is such a rare disease, but unfortunately it is a reality for the families that have been or are currently affected by it. As Claudia has mentioned above, a group os us have joined together to spread awareness and hopefully raise funds for this misunderstood disease. Thank you Gary and Terry for participating in this.

  • Becky Bogardus Weislow

    Thank you so much for airing this story. I have been amazed at how few people even know about this disease, yet how many people are touched by it through either the loss of a loved one or currently a loved one diagnosed with it. You can read more about the plight of those affected by visiting the guestbook at http://www.cjdfoundation.org If you are inclined to make a donation UCSF’s Memory Center would be a good option. Please let the reporter, Ann, know what a great job she did as well.

  • Nikki Bland

    Thanks so much for airing this story. I lost my mom to sporadic CJD in August 2007. Nearly every time I mention CJD to a doctor, they have no clue what it is – unless I bring up mad cow disease. Even then, they don’t have a clue. Gary, you are a remarkable man to share such a personal and painful story with the world. God bless you and your family and especially Terry. Many thanks to Dr. Geschwind for participating in this interview. I have had the opportunity to speak with him at the CJD Family Conference and he is compassionate, caring and committed to his patients. And to the reporter – thank you for taking on this story. It is something reporters here in West Virginia show no interest in covering.

  • Arturo de la Cerda

    I lost my dad to this cruel disease eight years ago. Gary and Terry are very courages to let the disease be profiled through this unfortunate journey

  • Elaine Schofield

    I believe there may be a treatment for CJD. In 2001, our sheep were diagnosed with the brain wasting disease Polioencephalomalacia -PEM, which later research found, has similar symptoms to many neurological illnesses and conditions in humans, including CJD. Similar symptoms – why not similar treatment?
    I won’t go into all the details here – but I’ve been giving my information to many medical support groups, doctors etc., and forums (some delete my posts) since 2001 and if you go to braintalkcommunities.org/forums you will find I’ve posted since 2006 on many threads. I believe the treatment – also for human use – may help to give better health and hope to many people, including those diagnosed with CJD of any kind. I’ve been told my research and findings are insignificant.
    I suffered similar symptoms to our sheep’s disease – I experimented with the treatment in tablet form, and each dose suppressed my symptoms within minutes for a few hours. After 18 months of experimentation, research, trial and error, my symptoms started to reverse.
    I had many tests – no diagnosis was given in relation to my symptoms and no medical cause was found. I’ve only recently realised, that as I didn’t have a diagnosis or cause – I was actually treating the symptoms. I discovered how and why the treatment worked. Yes, I believe my information is significant – it saved my life, and I’ve been trying to give my research and findings since 2001, to give hope to others.
    ainee – Elaine Schofield

    • Valeria Garcia

      My father in law was diagnosed with CJD two and half years ago. He has been in a sub acute center since. When he first started with the symptoms, doctors had no idea what was wrong with him; they had never seen anything like it. In fact, he received different diagnosis. For the family, it has been an overwhelmingly sad experience. To see a strong man go from being perfectly fine one day to being bed bound and non responsive the next was more than we could bear at times. There have been countless days of crying and pain, especially for my mother in law. I have wondered multiple times why more research hasn’t been done on this tragic disease. I don’t allow myself to worry or think about it too much, but it is believed my father in law’s CJD is genetic, so I can’t help to think about my husband (his son) and his brothers as potential victims of this disease in the future too. GOD FORBID! What can we do to promote more awareness and research???!!!

      • Elaine Schofield

        I posted the message above yours. Would you like to email me.

  • Kathleen Mandina

    Thanks for airing this segment on CJD. It’s a cruel disease that is seldom recognized early on and robs the victim of their personalities, their lives, and their physical abilities. Loved ones suffer enormously while trying to care for and help the person who is failing so rapidly and often without a diagnosis. Education is paramount in finding a cure and getting early diagnosis. Thank you again.

  • Marisa LaTorre

    Thank you so much for airing this segment. I lost my husband Wayne of this disease this past May 2010. It has also amazed me how many medical professionals have no clue. Gary my heart goes out to you, and your willingness to share in order to bring much needed media attention to CJD. And many thanks to the network for airing the story, and for the reporter who did such a good job.

    • Laurie Moses Mcdonald

      I am amazed at how much doctors do not know!My prayers are with you in the loss of your husband.

  • Sandra Faulkner Vickery

    Thank you so much for airing this report on CJD. My father died of sporadic CJD in 2009. It was so frustrating trying to get a diagnosis because most doctors have not treated this rare disease. With this disease being so similar to other neurological diseases such as Alzheimer and Parkinson Diseases, it often goes misdiagnosed because of lack of knowledge. It is a nightmare of a disease and needs to be researched more to treat and find a cure. Special thanks to Gary & Terry for letting the world see such an intimate, hard time in your lives for the sake of a cure. May God bless all who are suffering with CJD and their families who are left grieving the person they were before CJD and the person the disease destroyed in front of their eyes.

  • L:isa Rice

    Thank you, it is heartbreaking to watch such a beautiful , young woman struggle with her sanity, her functions and ultimately her life will end shortly. I lost my father to CJD in 1979 and know the pain and suffering and heartbreak associated with it. It does not make me happy that over thirty years after my father died of this that the doctors are still baffled when they hear the term CJD. My father also would ask the same question many times over, and some of her reactions reminded me of my dear father. How very painful…God bless the caregivers…

  • Rhonda Ralston

    Thank you for airing this story. I lost my sister to sCJD she was only 53 years old. She started having symptons at the end of 8/09 and we lost her 10/22/09. We did not know what is was until 3 weeks prior to her passing. I hope through broadcasts like this and research more doctors will become of aware of this horrifying disease. Thank you Dr. Geschwind for your reseach and the CJD Foundation for their hardwork and Gary and his wife for allowing the world to see what this disease can do to such a beautiful people.

  • Becky Bogardus Weislow

    I just spoke with a lovely woman, Lorraine, who lost her beloved husband to CJD on October 21st of this year. After his diagnosis, she attempted to reach out to locate others in her area who are also dealing with this mysterious disease. Unfortunately, this is a difficult task because of HIPPA laws – protection of privacy. UCSF, CJD Foundation and others are not allowed to release information. Through the airing of this story, she was finally able to make contact with Gary. It is very sad that while she was going through her ordeal, she was unaware that Gary’s three sisters all lived a couple of miles from her and that Gary himself was only 1-2 hours away. We have got to find ways to reach out to one another and the community……”knowledge is power”. I would encourage others to visit the CJD Foundation website if you are looking for others in your vacinity who share this unfortunate story.

  • Stacy Scott

    Awareness like this is what is needed to help find a cure for CJD. I lost my father in law Larry Scott Nov.2 2009 just 3 months after his diagnosis. He had just retired one year prior. Most Dr.s misdiagnose CJD & precious time is lost with loved ones with how rapid this disease can be. We in MN thank you for airing this report.

  • rosemarie smith

    I live in the UK.. And my son Billy Smith died of vC.J.D in january 2010 he was 21 years young… He was diagnosed in aug 2010 we too tried to contact other familys to talk about his illness but couldnt find any. we were told by the medical team he had been the only person to contract this disease in a long time.. I wasnt till after he died we got to meet many others who had suffered just like us.. Thank you for sharing your experiences with us as becky said knowledge is power we must pull together and let the world know that this disease is still here and is killing our loved ones

  • rosemarie smith

    I live in the UK.. And my son Billy Smith died of vC.J.D in january 2010 he was 21 years young… He was diagnosed in aug 2009 we too tried to contact other familys to talk about his illness but couldnt find any. we were told by the medical team he had been the only person to contract this disease in a long time.. I wasnt till after he died we got to meet many others who had suffered just like us.. Thank you for sharing your experiences with us as becky said knowledge is power we must pull together and let the world know that this disease is still here and is killing our loved ones

  • Becky Bogardus Weislow

    I am curious to know how those who posted here heard about the airing of this report. It would be nice to know if our Facebook efforts found any of you, through CJD Foundation, or other.

  • RoseMarie Smith

    Here in the UK we the familys are discouraged talking abut C.J.D in fact march memorial day we tock a film crew with us to record the event so as to let people know about this disease and were told by the cjd trust people if we wanted to behave in this manner we wernt allowed to mourn with the group and to make our own memorial day we all fell this should be news people should know about

  • Jose Alfaro

    I actually know this women. she is one of the best women i’ve ever met. she’s been there for me in some tough times of my life and has been like a mother to me.it makes me so sad to see her this way. my love and heart goes out to the bogardus family. wish i could see her, but sadly i know she’d would remember me. may god bless and her family.

  • Jody Flynn

    Thanks for airing this. There are so few people and doctors that are aware of this disease. I lost my mother July 2009 and the diagnosis itself was so difficult as nobody was aware of the disease. Awareness and research are key. The video is excellent, but only really touches on this horrible disease. the progression is absoutely devastating as others that have gone through it can attest.

  • Becky Bogardus Weislow

    A group of CJD Family has teamed up to walk in the 2011 Sonoma County Human Race to raise awareness and funding for UCSF Foundation – CJD Research. Please check out my personal page link below and follow our team’s efforts!


  • Kip Laven

    Kip Laven
    My wife was diagnosed april 11th after misdiagnoses symptoms about a mont earlier and now cant speak talk or function all within 1 month > T disease is devasstating to the family and all her friends no cure no reason why . We have two children 12 and 8 and my wife is 42 to young to lose a mother ! We need to find a cure and do more reserch to find a cure this is devastating to family friends children! My email is kalkip@charter.net and would like to hear from other cjd patients . My son is racing in phx this weekend and it is televised lucas offroad series and is running cure cjd ribbons on alot of the trucks. CURE CJD PLEASE !

  • Kip Laven

    This is part of our story about cjd and how it has afected our lives Cure CJD
    Kip Laven

  • Becky Bogardus Weislow
  • Becky Bogardus Weislow
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