Johns Hopkins scientists have been awarded a $3.7 million grant from the National Institutes of Health (NIH) to learn more about the nerve and muscle-wasting disease amyotrophic lateral sclerosis (ALS) using stem cells developed from ALS patients’ skin. The award, given over a two-year span, will be shared with three other laboratories, including one at Harvard University and two at Columbia University.

To read the full story, click the following link:

http://www.medicalnewstoday.com/articles/168317.php

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Viki's daughter, India (nurse), came over today to teach us how to use the new hoist we recently received to help get me out of bed or a chair as might be needed later if my health declines. This is one more example of how far and her family go to constantly lend us a valuable hand. We couldn't have better friends!

Viki's daughter, India (nurse), came over today to teach us how to use the new hoist we recently received to help get me out of bed or a chair as might be needed later if my health declines. This is one more example of how far she and her family go to constantly lend us a valuable hand. We couldn't have better friends!

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SAVE THE DATE: OCTOBER 2

August 14, 2009

FRIDAY NIGHT   OCTOBER  2
MUSIC FUNDRAISER FOR RICH-   ***DANCING WITH OUR FRIENDS   ***BANDS
WHERE: TO BE ANNOUNCED

Since returning home Friday night from San Diego, I have been following the doctor’s orders and resting up. These next two weeks are very important- rest, rest, rest along with a special diet and avoid catching a cold.

I must say though that in just a couple of days, I have bounced back better than I did from Germany. I’m hoping it is because this current therapy was unique to me and the stem cells were both expanded and targeted to do specific jobs. Within two days, I felt a little strength returning!

Over the next 10 weeks I am getting ongoing therapy injections at home. Yesterday my mother in law Lillian-the-nurse gave Ilana  hands-on training. Ilana did very well and will have no problem “sticking it” to me. Uh-oh, maybe it’s payback time for her…

Meet the Nepsis team!

August 2, 2009

Dr. Ramirez, Ilana, Keith, Me, Leticia

Dr. Ramirez, Ilana, Keith, Me, Leticia

Shuttle van drivers Abel and Grace with Me

Shuttle van drivers Abel and Grace with Me

The team at the Nepsis Institute who handled my stem cell therapy were all top notch. Professional attitude, friendly, comforting manner and clear patient focus.

And what about MY team? Ilana and Keith were wonderful, patient and giving. There is quite alot of orchestration that goes on to move me from place to place. They have it down to a science and are experts at their craft! I couldn’t have two better people with me. Thanks so much!

I’ve spent most of the day resting, although did have a nice brunch out with Ilana and Keith and just got back from a poolside BBQ at the hotel. Temps only in the high 70’s are magnificent! Weller Health confirmed to me today that my therapy was unique to me and I was the first to get this specific approach. We are all going to be watching the next six weeks to monitor progress. And I will be working with Weller management on updating their fundraising business plan. I hope to prove that I am one of soon-to-be thousands benefiting from these new therapies. Maybe we are the ones destined to become the “army” that goes to Washington and lobbies our government to help push this thru the FDA…?

After my stem cell therapy yesterday, I had a good dinner and a decent night’s sleep. I woke up this morning feeling back to normal. My normal, that is…. But after the shock to my body from the surgical procedures yesterday, I take this as an excellent bounceback sign. We’ll know more over the next six weeks as I will be taking weekly special injections at home as part of the updated therapy process. It appears I may be the first person to be treated to this extent.

After the disappointing news last week that the SB-509 clinical trial got suddenly closed out without including me, I rebounded and moved on with my back-up plan.

With assistance from my friends at Weller Health and the Nepsis Institute, I am scheduled to go to San Diego next week for more stem cell therapy on July 29. We will be  gone from July 28 thru 31. Exciting times ahead!

th_WOOHOO2

s_malheur-08 The clinical trial sponsor, Sangamo Biosciences, has suddenly closed out all remaining open participating spots two days ago without previously notifying the test sites of their intention. So now me and three other patients at CCR are left out in the cold. We CANNOT participate.

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