All posts by ENV

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Radio Show

11/02/2009
A few weeks ago my mother Joan participated in a half-hour radio interview with P.J. Ochlan of KGIL in Los Angeles. Since I can’t talk I had prepared some points to cover. Mr. Ochlan opted to read them verbatim and they are shown below (followed by a link to the show which you can download and play with Windows Media Player or similar program):
While I have an immediate financial need, this opportunity should be also used to inform the public. If not for the short average survival the number of concurrent PALS would be much higher and more visible like cancer or alzheimers. The NIH funding for ALS research is 10% of that for other diseases like atherosclerosis which already have effective treatment and are not fatal.
It would be nice to have Medicare support for home caregivers. Necessary skills are minimal (basic trach care, personal care) but are the daily difference between life and death. This is already supported in most or all European nations.
I am still a useful human, trying to use my skills and training to continue to assist others while researching the applicable biology and physiology to better understand what is happening to me. The mental acuity of PALS is very rarely impacted.
It is now clear that ALS is a multi-system disease which means more than just neurons are involved. Research into ALS therefore can be applied to many other diseases.

The show can be downloaded here.

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09/12-10/29/2009

10/29/2009

happy birthday Internet! I am proud to have known you before the web became your most prominent feature.

10/06/2009

The site was down last night and this morning. We increased our allowed monthly bandwidth and it was created as a new account rather than credit to our existing. Once it was cleared up it took overnight for the servers to sync. Joan did a credible job as a DNS administrator!

10/01/2009

It’s Hocktober! I’m excited to the point of levitation. Unfortunately this will be the first season I will not attend any games in person, but this is clearly the reason Philo Farnsworth invented TV!

Go Sharks!

09/23/2009

I wanted to thank everyone who has donated so far, and to reiterate that no amount is too small (even $5). I have been asked about the Paypal buttons. The first is a user-defined amount and the second is $25/month for 24 months. I also wanted everyone to know that I have left no stone unturned. I was diagnosed by the ALS teams at both UCSF (who follows me) and Mayo Clinic. I was even tested for an extremely rare bacteria possibly acquired during a surf trip in the South Pacific. I appreciate your concerns and your questions and am happy to share my knowledge and experience.

Thank you all again.

09/22/2009

Busy day. First, the Sentinel published a follow-up to the story last year, and yesterday a clinical trial I have been monitoring for two years finally got FDA approval. I have read the published pre-clinical animal studies and had the pleasure to converse with the CEO via email. i am not expecting a miracle but am anxious to see what happens regardless. Note that I am geographically unable to participate…

09/19/2009

Good news! I got picked up by the Huffington Post.

09/16/2009

we finally got the Paypal buttons up! It is quite a bit trickier to get that going (especially for a site like this) than one might think. Thanks to all of you who have already responded. Please spread the word. We should be able to populate the Photographs page tomorrow. I will sneak a few from my Facebook page…

09/12/2009

Hello and thank you for visiting. I will update here periodically to give an idea of what this experience is like, try to publicly answer questions thrown my way, and announce important new research in the quest for a treatment and/or cure. Older posts will be archived in the future as we change and improve the site.

Please check back often and don’t hesitate to ask me a question; I spend a lot of time on research and enjoy sharing what I learn.