Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am glad to finally see information being made available about this disease.. THANKS for the website"

Archives - 2015 and Older Transcripts

Topic: Open Forum      
Host: Not Hosted      
         
Hugo Rodriguez Good Morning Jackj    
jackj   good morning, Hugo.  I'm from Southern California.  Where are you from?    
Hugo Rodriguez I Live in Queretaro City at the center of Mexico    
jackj   my son, 37, was diagnosed with KD  a couple months ago.  My wife and I are still digesting this and trying to figure out how we can be supportive to him and to finding a cure
Hugo Rodriguez I'm from a town close to Pico (peak) de Orizaba, the highest mountain in Mexico.  
Hugo Rodriguez I'am confused. I beleived that our sons (males) don´t inherite the disease. `
Hugo Rodriguez I'm 63 and was diagnosed with D some 7 years ago    
Hugo Rodriguez After beleiving that was ALS, due to some electromiograpies.    
jackj   It looks like my wife was the carrier and our son got the disease.  We don't really know if she got it from her mother or her father, who died in his 90s and was diagnosed with Parkinsons 
Stewart   Hi Good morning All from Southern California, Happy 4th    
Hugo Rodriguez Yes, my daugthers are KD carriers and the    
Hugo Rodriguez ... their sons (not yet born not conceived), has 50 % probability to being affected with KD
Hugo Rodriguez Good morning Stewart    
jackj   Good morning Stewart!  I'm from Orange County.  Planning a bike ride to Laguna Beach after this call.
Hugo Rodriguez Nice plan Jackj    
Stewart   Hi Jack, Hugo, Jack, I live on Torrance      
Hugo Rodriguez Sorry, I wasn't concern on national holyday today.    
Hugo Rodriguez Stewart, where is Torrance?    
jackj   My wife and I were very grateful to find this incredibly helpful website.  It is clear that a lot of folks have put in a great deal of meaningful work on the site 
Stewart   Torrance is in the Los Angeles area    
Hugo Rodriguez I have a sister living in Los Angeles. I asked here to do the KD test to know if she is a carrier. Do some know if the MDA is performing the test?
Hugo Rodriguez Your right  Jackj, I want find a way to give some help to the KDA.    
jackj   I don't know if MDA is involved or not.  My son was prescribed for the test by a neurologist.  v
Hugo Rodriguez In Mexico, the test is only performed for researchers and not offered as a current test.
Stewart   My family doesn’t give birthday gifts any more we donate money to the KDA in each other’s names
Hugo Rodriguez Is a good option.    
Hugo Rodriguez I will inform to my family your decision Stewart.    
jackj   Thats a good idea!  I have been doing some background searches on crowdfunding.  so far I have not seen much in the way of success in raising any significant money for medical research 
jackj   One of the problems we face is there are so relatively few people with the disease that it doesn't get much attention or big research money.  I was delighted to see what Novartis is doing, and the optimism that Dr Fisbeck showed in his video on the websight 
jackj   Hello billeric!    
Stewart   When my family and friends buy things on Amazon we purchase through Amazon smile and the  KDA  is listed as the charity of choice and KDA gets a percentage of the purchase
jackj   That's a good idea.  I will pass this on to family and friends    
Hugo Rodriguez I 'm doing wrong things, going out and in the chat accidently    
Stewart   Jack are you in the IGF clinical trial, they have a site in OC giving the weekly shots. I was going to shoot an Email off to NIH to see they would like to have me as a participant.
jackj   Henry,  last chat was my first btime.  I had a lot of difficulties until I changed to Mazilla Firefox from internet explorer
Hugo Rodriguez Angela inform me that NOvartis drug trial was for patients living at driving distance to the NIH, because to the weekly shots
jackj   Is IGF the same as th Novartis BVS 857 trial?    
Stewart   It seems like every time I login to the chat I have to undate Java    
Hugo Rodriguez I beleive that both are the same    
Stewart    Yes, BVS857 that Novartris has under activates the IGF-1 pathway    
Hugo Rodriguez Using the Chrome window to get into the chat, I receive messages informed that some options will not be supporte in the future. This  doesn't happen when I use Explorer.
jackj   My son lives in the Bay area.  I don't know if the shots are available there or not.  
Stewart   The NIH site has a list of locations, I don't remember seeing anything in the Bay Area.  
jackj   I was unable to find anything specific about BVS 857 on the Novartis website.  All I know is what I heard on Fishbeck's video.
jackj   It sounds like I my find more on the NIH site    
Hugo Rodriguez Buenos tardes Javier.    
frabayrui   holaaaaa    
frabayrui   Hugo    
frabayrui   perdona de que están hablando por favor    
Hugo Rodriguez Is National Holiday in the US.    
frabayrui   ah siiii    
frabayrui   cierto    
jackj   Welcome Frabayrui, where are you from?    
frabayrui   Spain    
frabayrui   I am affected for SBMA    
frabayrui   Where you are?     
frabayrui   I have 53 years old    
Stewart   Jack, I know if you go on the NIH site I am trying to find a link for you.    
frabayrui   I live in Seville, Spain    
jackj   We are separated by lots of space but united by a common cause    
frabayrui   Wait I d'ont speak english easy    
Hugo Rodriguez Yes, we are    
frabayrui   I have Google traductor    
Hugo Rodriguez I'm trying to help fraybarui to translate the chat     
frabayrui   yes thanks Hugo    
frabayrui   very thanks    
Hugo Rodriguez (in a separate window)    
Stewart   http://patientportal.cc.nih.gov    
jackj   Thanks a lot Stewart!  I will go there after we finish    
jackj   The material I read is that women with Kennedys may have moderate symptoms.  we are wondering if some of the muscle related issues my wife is having may be due to  KD
jackj   We are in our mid sixties    
Stewart   Yes some woman have mild symptoms I know some woman get bad muscle cramping
Hugo Rodriguez I know that my mom suffer of bad cramps     
jackj   Thanks       Has anyone attended the annual conferences.  Are they very helpful to family members
Hugo Rodriguez I have not, I hope some year start with that.    
frabayrui   I want to participate in the clinical trial BVS857 somewhere in the world    
frabayrui   Italia, Germany or Danmark are countries the most next    
Hugo Rodriguez Frabayrui asks ifsome know where in other country are testing the Novartis drug   
frabayrui   but I like to travel to the US and be there the time required    
Stewart   I have attended three conferances, well worth it, Great. I don't think I will be there this year limited vacation time remaining. 
Hugo Rodriguez Ok guys have a m    
Hugo Rodriguez ... have anice and enjoyable July 4th    
frabayrui   Nice July 4th    
frabayrui   for the americans    
Stewart   Well Gentlemen Thanks, take care, have a great week catch you next Chat....  
frabayrui   happy day    
jackj   It was nice meeting you guys.  Thanks for the useful info!    
Hugo Rodriguez Bye by now,    
frabayrui   I'm taking trehalose and I think that benefits me    
frabayrui   Bye    
frabayrui   from Spain