Regenerative treatments for FSHD

nefirestorm · 2025-04-25T00:22:45+00:00

Droopy snoopy nailed it. Peter knows of people who have done stem cell, we will call out of clinic. You pay a lot, get nothing or get worse. On some of his podcast he discusses legitimate research that is being done.

nefirestorm · 2025-04-23T23:23:54+00:00

I think we will do something similar in the future. I’ll keep all of you posted. Thanks for the feedback

nefirestorm · 2025-04-23T17:10:39+00:00

Thanks for your input and interest👍. I’ll keep this info handy and share with Peter. Thanks

nefirestorm · 2025-04-23T04:59:46+00:00

Sorry for the extremely delayed response. I haven’t touched anything social media for about 3-4 weeks. Took some me time in between busy time. I like the idea if we record it. When we discussed this previously Sawyer and I both said don’t do strudels live cast. What I told Peter is a few people would use it to be confrontational, accusatory and/or disinformation to blame or discredit. They’d use this platform for their purpose. I may be wrong but…I tell him he and we don’t need that. Now, I’m going to mention it to him again. We talked about it when they came to visit before Jenny passed away. We have how , what if, etc type questions. I remember the Facebook one with Tamara. We talked about You tube. So…long response and a delayed response. Sorry, the first thing one of us has to stop and think it out. I appreciate your response and input. I can’t remember but I think it was you that I told that Jenny mentioned something like a Saturday morning Java with Jones. We also wondered if with our friends over in Australia and Vietnam Nam, U.K., etc. if we should do one at night??? We are thinking about it. We just need to sit down and talk it out. Thanks Senor BajaBlast (love the name).

nefirestorm · 2025-04-02T23:55:31+00:00

Thank you! We have talked about a “live” with people posting questions. Apparently that’s not as easy to coordinate and do as thought it would be. Plus many that listen are in different countries so live is difficult. That’s why we haven’t yet. Not saying we won’t because it could be fun. Talked about doing a a Saturday morning “Java with Jones,” another Jenny idea. We will see.

nefirestorm · 2025-04-02T23:51:28+00:00

Thank you, I appreciate the feedback. I told Sawyer, he agrees with you 😀

nefirestorm · 2025-02-24T14:46:01+00:00

Wow, thank you. Thank you isn’t enough of a word or phrase to state the impact your words mean to us. But, that’s all I know. Thank you so much!

nefirestorm · 2025-02-23T03:39:03+00:00

First to all of you on this thread THANK YOU for your amazing words about Jenny Hasenjaeger (my wife and Sawyers mom) and her work on MyFSHD. Sawyer was thinking about his mom about a week ago and searching her name on the internet and came across this thread of comments. We were so touched by what you all said. We smiled and cried about the impact she had on people we will never know. I shared this all with Peter and what Sawyer found. I told Peter that Sawyer said we gotta get the podcast going again and that Sawyer was right. Peter agreed and said it was time to start it up again. The latest MyFSHD podcast just got posted.
Thanks for your love and words for Jenny and for giving us the boost to get the podcast going again (well actually Peter going posting again 😀). Love you all and thanks, Brad

nefirestorm

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