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Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by ToddAllen
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Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by ToddAllen
There is awareness of the potential of enzalutamide as there have been studies of it and related dru......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by micheldou
Thank you for your reply. We are consulting KD experts in China, but we have no results yet, I would......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by ToddAllen
Thanks for the detailed response. It is good to see your friend is trying to collect data to evalua......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by micheldou
my friend continue tests his health data...
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by micheldou
this is my friend response:My age is 35, and I have had three CAG repeat tests for 46,55 and 51 time......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by ToddAllen
Sorry for my delayed response. I was hoping to find more information on the potential of ARV-766 an......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by micheldou
Here it is:https://ir.arvinas.com/news-releases/news-release-details/arvinas-announces-upcoming-bavd......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by micheldou
DEAR Mr.ToddAllen,Thank you for your answer.My KD friend, He took Enzalutamide for a month, CK from ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by ToddAllen
Hi, welcome to this forum and thanks for your excellent questions. Several androgen blocking prosta......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by micheldou
One topic discussed ar-protac can solve Kd problem. ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by micheldou
Hello,my friends,I am a kd patient from china.The questions I need to ask include the following five......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  Several understandings in the diagnosis and treatment of Kennedy's disease (in Discussion of Papers) by micheldou
KD chinese technical group of the draft In November, 2023 1. Androgen blockade, how AR antagonists a......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: Carrier of the disease (in Carrier Discussion) by ToddAllen
Here is a paper that suggests the KD mutation is several times more common than estimates based on r......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Carrier Discussion

Discussion Topic  Carrier of the disease (in Carrier Discussion) by Imokru2
My late brother contracted Kennedy’s but I did not. My mother of course was the carrier. I live in t......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Carrier Discussion

Discussion Topic  RE: Hopeful News (in Medications and Therapies) by ToddAllen
Both drugs are in the first phase of testing which does not tell us about the benefits or side effec......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Discussion Topic  Hopeful News (in Medications and Therapies) by Reba
Hi, everyone, Just wondering if you have seen these clinical trials and what your thoughts are: ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Poll  RE: Bariatric Surgery on KD pacients (in Open Topic) by ToddAllen
Excellent post Bob, I hope you have been doing well. I have had a lot of ups and downs but my over ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Poll  RE: Bariatric Surgery on KD pacients (in Open Topic) by Bob Heitzman
I concur with Todd on Keto diet. There is a spectrum on the amount of carbs per day: Low Carb <10......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Poll  RE: Bariatric Surgery on KD pacients (in Open Topic) by ToddAllen
I did a quick search but didn't find anything on KD patients having bariatric surgery. Here is a li......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Poll  Bariatric Surgery on KD pacients (in Open Topic) by Vanko
Are there any known studies about bariatric surgery on KD pacients? I'm a 44 years old male carrier,......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Advice for pre-symptomatic patient (in Open Topic) by Pablo Crespo
Hi everyone, My name is Pablo Crespo, and I'm 24 years old. I was diagnosed with Kennedy's disease ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Treffen der von SBMA - Betroffenen in Deutschland (in German Discussion) by bluefo
Das nächste bundesweite Treffen der an SBMA (Kennedy's Disease) Erkrankten, findet am 24.06.2023 in ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > German Discussion

Discussion Topic  RE: Artificial intelligence (in Open Topic) by ToddAllen
Want to take the next small step or giant leap? It's getting much cheaper and easier. ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Artificial intelligence (in Open Topic) by bartfarkel
Just for fun, I queried Chat GPT to write a CRISPR sequence that could treat Kennedy’s Disease. Here......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Increased BMs (in Open Topic) by ToddAllen
My first thought would be a food sensitivity to a regularly consumed food. I had problems with inte......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Increased BMs (in Open Topic) by raxel19
Hi there, Sorry for the potentially gross discussion, but has anyone experienced uptake in their BM......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Starting Journal Club (in Discussion of Papers) by Tim in TN
Bob, Are you still moving forward on this? if so can you share the articles so I have an opportunity......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: Starting Journal Club (in Discussion of Papers) by Tim in TN
Id like to try it. Something new. I need to learn more about what it a journal club is. I can commun......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: Starting Journal Club (in Discussion of Papers) by dorsey
I too would be interested in participating....
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: Starting Journal Club (in Discussion of Papers) by Pierre
Hi Bob, Yes I would be very interested in joining the journal club. Keep me posted. thanks, Pierre...
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  Starting Journal Club (in Discussion of Papers) by Bob
Hi All, I am interested in starting a SBMA 'Journal Club' to read articles related to KD and discus......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: support group ? (in Open Topic) by Bob
Men’s Support Group It sounds like there is significant interest in forming an online support group......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  support group ? (in Open Topic) by Tim in TN
I'm wanting to know if anyone is interested in forming a support group. Virtual meeting perhaps (wee......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Anyone with KD in your 20's/30's? (in Open Topic) by Bob Heitzman
Have you confirmed the KD diagnoses with a genetic test? BTW There is a KDA Facebook group that is......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Anyone with KD in your 20's/30's? (in Open Topic) by Young
I'm a 26 yo male in the Bay Area who has been experiencing increasing symptoms in the past two year ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Neurologist in the SF Bay Area (in Open Topic) by DF
Thank you, Ron! Looks like many doctors from Stanford Neuroscience Health Center are still there. I ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Neurologist in the SF Bay Area (in Open Topic) by Ronald M.
Hello DF. First, I want to point out that I have never lived in California to know of a Dr. The belo......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Neurologist in the SF Bay Area (in Open Topic) by DF
I have KD and am moving to the Bay Area in the new year. I am looking for a neurologist in the area ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Early Symptoms? (in Open Topic) by Rtrainor
Hello all, New here. Just reaching out to see if my symptoms align with KD. Here are my symptoms: ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Cold Climate Challenges (in Open Topic) by Tim in TN
I'm in East TN and my muscles don't work in the cold. the colder the less they work. My wife and I a......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Cold Climate Challenges (in Open Topic) by Nick0651
I can say as someone from Minnesota, I have to be extra careful during the winter. Icy surfaces bei......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Cold Climate Challenges (in Open Topic) by Ben
I fully agree with you Ronald. It became a safety issue of not being able to get outside when there ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Cold Climate Challenges (in Open Topic) by Ronald M.
Hello. Its so hard to comment on because its so individualized. I know men that live in cold climate......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Cold Climate Challenges (in Open Topic) by Ben
Hi Kevin, FWIW: I'm currently in the northeast and am moving to avoid being in such a cold climat......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Cold Climate Challenges (in Open Topic) by Kevin W
Was wondering how cold climate may be affecting KD symptoms. I'm considering relocating the the no......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Hi intensity Exercise (in Exercise Discussion) by dorsey
Curious examples of intense? Lifting to failure with multiple sets?...
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Exercise Discussion

Discussion Topic  Hi intensity Exercise (in Exercise Discussion) by Robert Greer
Is anyone on a hi intensity exercise program. My name is Robert I'm 64 I would classify my KD as adv......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Exercise Discussion

Discussion Topic  RE: Swallowing exercise? (in Exercise Discussion) by barkersburg
Just practice them. I think the exercise is gonna work a lot if we continue doing this daily. The fi......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Exercise Discussion

Discussion Topic  RE: Just diagnosed (in Open Topic) by Juan
Hi David, Thanks a lot for your message and info! I will definitely try to attend the KDA conference......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic


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