July 2009


It was about 95 deg. In the shop last night.

While making airplane parts and pasting stupid dog pictures on my blog………..

Boss says………”Small…..you wanna work the weekend?”
(Cooling vest ice packs quickly melting)

“Sure”……..I said.

What a moron.

Now I have to tell him it’s my anniversary or something like that.

Hmmmmm………..

“Wait a second……..IT IS MY ANIVERSARY……….!!!!”

Hopefully it’ll cool down here in Seattle and I’ll take her to “Fish and chips” or something.

After 18 years and all……….she’s probably earned it.

Wooooooo………It’s hot in here.

Stay Cool and Be Well
Todd

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When it come to stem cell....professor Slavin is "Top Dog"

When it come to stem cell....professor Slavin is one of the "Top Dogs"

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To Friends and Family…..please forgive……I invited some people from MSWorld to come and take a look here at this next post.

Who knows……I may even meet some of these MSWorld people.
(unlike PLM,……..People cannot email each other or share links to websites pertaining to the disease at MSWorld. (dumb guidelines if you ask me)

I don’t think Professor Slavin liked having his publications questioned half a world away…….(The BRI in downtown Seattle last Friday)

Sometimes it’s so easy to say of another’s work:

…….”Nope”…..”Won’t work”…..”Can’t do that”…..”It’ll never happen”…….”Danger”…….”Risky”…….

I think doctors say it all the time to avoid a liability issue.

Then there is the few that say:
……”it could”…….”why wouldn’t it work”…..”What if we did this”……

I think this is what Professor Slavin and I have in common.

Here is some light reading for you: (Don’t forget that Wikipedia link I gave you the other day)
First,…………..his email to me in regards to my BRI synopsis from last Friday.

The Professor writes:

Dear Todd,

Thanks for the information regarding stem cell activities in other locations. In your email you mentioned re Dr. Nepom commenting that “Professor Slavin had not published any data in a while regarding this procedure”.

I would greatly appreciate if you could tell Dr. Nepom that not only have we pioneered the use of mesenchymal stromal stem cells for the treatment of multiple sclerorsis, amyotrophic lateral sclerosis, spinal injury and some related clinical syndromes, but we also have several publications on the role of stem cells for the treatment of neurological disorders, one that was already sent to the New England J Medicine. In fact, we wrote the first paper on the subject suggesting first in a pre-clinical animal model in mice that treatment with stem cells may be of benefit for such patients and subsequently pioneered similar application in clinical practice.

Attached please find a list of publications that Dr. Neopom could look over on PubMed, and I would be happy to hear his response after reading the contents of this list.

Thanks again for providing us with this interesting information.

Regards,
Shimon Slavin, M.D.
Professor of Medicine
Scientific & Medical Director
The International Center for Cell Therapy & Cancer Immunotherapy (CTCI)
Tel Aviv Medical Center & Top Ichilov at the Weizman Center

He then attaches a word document with the following links:
(you may need to cut and paste the “HTTP” links below into your web browser)

Items 1 – 16 of 16

1: Neuroprotection and immunomodulation with mesenchymal stem cells in chronic experimental autoimmune encephalomyelitis.
Kassis I, Grigoriadis N, Gowda-Kurkalli B, Mizrachi-Kol R, Ben-Hur T, Slavin S, Abramsky O, Karussis D.
Arch Neurol. 2008 Jun;65(6):753-61.
PMID: 18541795 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/18541795?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

2: The potential use of adult stem cells for the treatment of multiple sclerosis and other neurodegenerative disorders.
Slavin S, Kurkalli BG, Karussis D.
Clin Neurol Neurosurg. 2008 Nov;110(9):943-6. Epub 2008 Mar 6. Review.
PMID: 18325660 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/18325660?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

3: CD44 involvement in autoimmune inflammations: the lesson to be learned from CD44-targeting by antibody or from knockout mice.
Naor D, Nedvetzki S, Walmsley M, Yayon A, Turley EA, Golan I, Caspi D, Sebban LE, Zick Y, Garin T, Karussis D, Assayag-Asherie N, Raz I, Weiss L, Slavin S, Golan I.
Ann N Y Acad Sci. 2007 Sep;1110:233-47. Review.
PMID: 17911438 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17911438?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

4: Immunomodulation and neuroprotection with mesenchymal bone marrow stem cells (MSCs): a proposed treatment for multiple sclerosis and other neuroimmunological/neurodegenerative diseases.
Karussis D, Kassis I, Kurkalli BG, Slavin S.
J Neurol Sci. 2008 Feb 15;265(1-2):131-5. Epub 2007 Jul 3. Review.
PMID: 17610906 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17610906?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

5: Neuroprotection in multiple sclerosis.
Karussis D, Grigoriadis S, Polyzoidou E, Grigoriadis N, Slavin S, Abramsky O.
Clin Neurol Neurosurg. 2006 Mar;108(3):250-4. Epub 2006 Jan 4. Review.
PMID: 16413962 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/16413962?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

6: Hematopoietic stem cell transplantation for multiple sclerosis.
Burt RK, Cohen B, Rose J, Petersen F, Oyama Y, Stefoski D, Katsamakis G, Carrier E, Kozak T, Muraro PA, Martin R, Hintzen R, Slavin S, Karussis D, Haggiag S, Voltarelli JC, Ellison GW, Jovanovic B, Popat U, McGuirk J, Statkute L, Verda L, Haas J, Arnold R.
Arch Neurol. 2005 Jun;62(6):860-4. Review. No abstract available.
PMID: 15956156 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/15956156?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

7: Hematopoietic stem cell transplantation in multiple sclerosis: experimental evidence to rethink the procedures.
Karussis D, Slavin S.
J Neurol Sci. 2004 Aug 15;223(1):59-64. Review.
PMID: 15261562 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/15261562?ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

8: Immunomodulation of autoimmunity in MRL/lpr mice with syngeneic bone marrow transplantation (SBMT).
Karussis DM, Vourka-Karussis U, Lehmann D, Abramsky O, Ben-Nun A, Slavin S.
Clin Exp Immunol. 1995 Apr;100(1):111-7.
PMID: 7697909 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/7697909?ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

9: Enhancement of GVL effect with rhIL-2 following BMT in a murine model for acute myeloid leukemia in SJL/J mice.
Vourka-Karussis U, Karussis D, Ackerstein A, Slavin S.
Exp Hematol. 1995 Mar;23(3):196-201.
PMID: 7875238 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/7875238?ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

10: Immunomodulation of autoimmunity by linomide.
Karussis DM, Lehmann D, Slavin S, Kalland T, Vourka-Karussis U, Mizrachi-Koll R, Ovadia H, Abramsky O.
Isr J Med Sci. 1995 Jan;31(1):38-41. No abstract available.
PMID: 7836046 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/7836046?ordinalpos=10&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

11: Inhibition of acute, experimental autoimmune encephalomyelitis by the synthetic immunomodulator linomide.
Karussis DM, Lehmann D, Slavin S, Vourka-Karussis U, Mizrachi-Koll R, Ovadia H, Ben-Nun A, Kalland T, Abramsky O.
Ann Neurol. 1993 Nov;34(5):654-60.
PMID: 8239559 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/8239559?ordinalpos=11&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

12: Prevention and reversal of adoptively transferred, chronic relapsing experimental autoimmune encephalomyelitis with a single high dose cytoreductive treatment followed by syngeneic bone marrow transplantation.
Karussis DM, Vourka-Karussis U, Lehmann D, Ovadia H, Mizrachi-Koll R, Ben-Nun A, Abramsky O, Slavin S.
J Clin Invest. 1993 Aug;92(2):765-72.
PMID: 7688762 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/7688762?ordinalpos=12&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

13: Treatment of chronic-relapsing experimental autoimmune encephalomyelitis with the synthetic immunomodulator linomide (quinoline-3-carboxamide).
Karussis DM, Lehmann D, Slavin S, Vourka-Karussis U, Mizrachi-Koll R, Ovadia H, Kalland T, Abramsky O.
Proc Natl Acad Sci U S A. 1993 Jul 15;90(14):6400-4.
PMID: 8341645 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/8341645?ordinalpos=13&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

14: Immunohematopoietic reconstitution by allogeneic and autologous bone marrow grafts as a means for induction of specific unresponsiveness to donor-specific allografts and modified self in autoimmune disorders.
Slavin S, Karussis D, Weiss L, Vourka-Karussis U, Abramsky O.
Transplant Proc. 1993 Feb;25(1 Pt 2):1274-5. No abstract available.
PMID: 8442110 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/8442110?ordinalpos=14&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

15: Chronic-relapsing experimental autoimmune encephalomyelitis (CR-EAE): treatment and induction of tolerance, with high dose cyclophosphamide followed by syngeneic bone marrow transplantation.
Karussis DM, Slavin S, Ben-Nun A, Ovadia H, Vourka-Karussis U, Lehmann D, Mizrachi-Kol R, Abramsky O.
J Neuroimmunol. 1992 Aug;39(3):201-10.
PMID: 1644896 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1644896?ordinalpos=15&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

16: Prevention of experimental autoimmune encephalomyelitis and induction of tolerance with acute immunosuppression followed by syngeneic bone marrow transplantation.
Karussis DM, Slavin S, Lehmann D, Mizrachi-Koll R, Abramsky O, Ben-Nun A.
J Immunol. 1992 Mar 15;148(6):1693-8.
PMID: 1541813 [PubMed – indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1541813?ordinalpos=16&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

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USA puppy

And then you have stem cell in the USA……….The Stem Cell puppy says:

“Hmmmmmm………Let me lie down and think about this……….How much money is this going to make me?”

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This is going to work. Be Well,
Todd

 

The one piece of the pie that had been missing in all this was validation.  There are so many different directions to consider when looking at a Stem Cell procedures worldwide,.…….that one can become easily overwhelmed.

When I met with my neurologist about two months ago,….we discussed what I was doing,…..he thought oversees Stem Cell was a waist of money. 

“Risky” he said.

“How so?”….I asked.

After a 1 hour and twenty minute appointment w/ the Neuro,…..Julie and I walked away with still the same questions.

How has he never heard of Professor Slavin?

And we still wondered…..where was the risk?

 

 

The “doubt”,…. I guess, had always been in the back of my mind.  “I’m not a doctor”, I kept telling myself…..and the only information I had was patient testimonials and scientific reports written so vaguely that one could only translate positive results or at worst… no result at all. 

I could relate to the positive results the MS’ers I had been tracking were experiencing. I was hopeful. But again: “I’m only a patient” and still…..

“The doubt.”

 

  

Then along comes.. “Science Friday”.. at the Virginia Mason – Benaroya Research Institute here in Seattle, Washington.  This is an invite only presentation that only happens twice a year. It was held in a nice conference room at thier downtown facility and included Julie and I and about 25-30 others. The others included: investors, media, management, fundraising people and a few patients. Also a few friends and/or relatives of various auto-immune disease patients.

The meeting was conducted by Dr. Nepom, the “Director” of the institute.  He went through the various drugs in study and the different Human trials that are still in their infancy.  At this point, I wished I had brought a video camera. (That probably would have not gone over to well). He really didn’t go over the stem cell direction they were headed….he only covered what they had learned in terms of how cells are attacked and then destroyed by our own immune system.

 He talked for about an hour and then answered a few questions. We then went on a tour of the cellular research lab.  Very cool.  The research technician showed us the different machines that analyzed and marked the different cells.  Again…..Fascinating technology.  He really didn’t get into what they were looking for…….just commenting on how it all worked. The technician was very knowledgeable and described perfectly how MS attacks and impacts those that are unfortunate enough to be stricken.

 The time was ending in the lab and it was time to return to the conference room for the conclusion of the meeting.

 

This is where my mobility (lack there of) paid off.    While traveling at light speed down the long hallway back to the conference room….Julie took the time to explain to the researcher that we were involved with stem cell in Israel.  He said he knew of Professor Slavin’s work and that they too are also actively researching the mesenchymal stem cell family.  He made mention that their reaserch involved auto-immune disease prevention where as professor Slavin’s reaserch promoted repair and immune stability.

 

BINGO……..!!!!!!!!!

 

We only told him where we were going and who we were seeing.

 

He then told us…….. what we were getting.

 

Finally…………validation a half a world away here in Seattle.

 

Once back at the conference room, the meeting concluded with a few more words from the doctor about the insitute and how it was linked with other research centers around the world i.e………Oxford, England, Stanford, Harvard School of Medicine and other big places in Europe and China.

During the Q/A session that followed, Trish leaned over to me and said that Dr. Nepom wanted to talk after the meeting.  Cool.  I had brought my folder w/ all my different stem cell protocol info in it. 

The doctor and I talked awhile and he explained that Professor Slavin had not published any data in a while regarding this procedure.  I showed him the info that I had and asked him what he though. He liked and confirmed that Proffesor Slavin is well respected the world over.

 When lighting strikes twice in one day…..that was enough for me.  We came home and it finally dawned on me.  The last remaining questions I had about all this had just been answered.

 

Two Scientists validating the protocol……..I guess the rest is now up to me.

 

Thanks Trish………..You’ll never know what a great day that was for Julie and I.  Much love. This is going to work.

 Be Well

Todd

www.patientslikeme.com

It’s not just for people w/ MS……..It’s much, much bigger than that.  They cover many different diseases.  Maybe you or someone you know is one of the “afflicted”

.

PLM is a great learning site. A very powerful site that has helped me and my MS tremendously. There are some very smart people there. If you don’t know the answer to an MS question, start a thread.

Example:

“I’ve got crazy spasms in my legs. What meds do you guys take?”

Wait approximately 15 minutes……. and BAMB!!!!!!

You’ll probably get five or so responses.

Then research the drug in the “Treatments” section.

There you go. “Presto.” An informed discussion next time you see the Doctor.

 

You can really get into the site by filling out your online profile.  Yes….what you do is visible to other patients……but you are the afflicted…….and maybe…..just maybe…..somebody else out there is suffering just like you.

How do they deal with it?…….Hmmm…..maybe you never thought of that treatment?

I personally don’t post comments every day due to the fact I work full time. But I definitely log on every night to learn, laugh, and relate. Don’t get me wrong,…. normal trips to the doctor are good, but they don’t give you “the laugh and the relate part.” I’m also not one to sit in a support group and wait for my turn to put my story out there.  

PLM is also open 24/7. No appointment necessary.

Link:

www.patientslikeme.com

Be Well

Todd

Update:

 

Been feeling a lot better this week since the Tysabri infusion Tuesday.

Tysabri is my Multiple Sclerosis DMD (disease modifying drug)

Please note the word “modifying”.  There is no cure for MS so……..us MS’ers get put on one of about six different DMD’s made available to us

 

Clear?…………”Crystal” you say.

 

With MS (and probably any other disease)… the body doesn’t like surprises…….I’m sure that the 400ml bone marrow missing was the surprise that my body didn’t really appreciate three weeks ago. Thus the weakfish feeling those last few weeks before Tysabri Tuesday.

 Now…….we should be OK…….Just 7-9 more weeks till transfusion. The date can’t come soon enough.

Be Well

Todd

 

Thank you,……cousin Larry

 

One of my first jobs out of high school was being a flight attendant…… um…um…”Steward”…….. for Continental Airlines.  

After passing all the safety tests at Continental’s home base in Houston, Texas…. I had two days to report to work at my new home in Newark, N.J. (basically New York)

 Upon arriving in Newark with all of my worldly possessions (A bicycle, suitcase and $650.00),  I reached into my pocket for the phone # of the only person I knew.  I think I had met Larry back when I was in grade school.  It had been a long time.  And I only had about 30-40 cousins in Oregon.  He had to have been at one of those Chistmas parties.

Mom told me that cousin Larry in New Jersey would help me out.

 

“Cool”…..”I’ll just give him a call”  (I’m sure he’ll just be waiting by the phone)

That’s kind of how the world revolves around you when you are 19.

 

First call………..No answer.

Call again…………..Nope

Call again…………..same…….. nothing

(3 hours in airport) Last Call………..Again no answer.

 

 After three hours……and about 30 phone calls……..I decided to go across the street and spend the night w/ 18 other flight attendants in one room at the “Holiday Inn”. 

All 18 of us had the same…..one person we knew….phone #.

 

I guess when you’re a pilot (like Larry);…. you’re trips can last for days when you’re working.  

Go figure.

 

After about 5 days…….the hotel room started to thin out……..It also got more expensive.  Then finally:

“Todd!!!!!!!!!!!………phones for you”

It was Larry….Thank God.

He set me up with my 1st place……..A room in a big beautiful 7 bedroom house in Elizabeth, NJ.  just 15min. from the airport.  He also hooked me up with a car for $150.00. I only lasted 2 years w/ the airline but I never forget the kindness shown to me by Larry.

Thanks you, Larry…….. and now from me and all my other MS comrades…… we thank you again………

……………800,000 times !!!!!!!!!

I knew you were involved with the MS150………but I didn’t really,really know just how big a deal it was for you.  What a coincidence.  Much Love. Thanks Larry. 

 Check this link out:

 http://www.statesmanjournal.com/apps/pbcs.dll/article?AID=/200907150312/OUTDOORS/907150426

Bumping this up from the bottom of the Blog:

 

“Israeli stem cell (MSC) procedure synopsis”

(Enriched autologous mesenchymal stromal cells treatment) 

 

06/30/2009 – Clinic evaluation and blood work – Tel Aviv, Israel 

07/03/2009 – 400ml of bone marrow extracted from hip bone – Tel Aviv, Israel – outpatient procedure. 

Come Home 

It’ll take 10 to12 weeks to separate the multipotent MSC’s, replicate between 70-80 million MSC’s in a clean room lab environment, clean, inspection by third party lab, and then prepare for transplantation.  

Sept./Oct. – Stem Cell Transplant – 70-80 million MSC’s divided equally to be administered half via intrathecal (spinal tap) and half via IV injections. – procedure preformed in Istanbul, Turkey or Athens, Greece (TBD). Minimum hospital stay 1 day.  Observation requirement 

Based on some numerical analysis by the Biomed rep, 70-80 million cells will replicate into 40 Billion cells within 3 to 6 months. 

Come home and rehab like hell. 

 

Using the patient’s own bone marrow, the cells are cultured to enrich the number of autologous MSCs to nearly 100%.  It is felt that the MSCs can down regulate the autoimmune process by inactivation of self-reactive lymphocytes & in some cases, this treatment may also reverse some of the disease manifestations, most likely due to the regeneration of damaged neurons or stimulation of locally residing stem cells in the brain and spinal cord.  It can take 3 months to a year for positive changes to occur as the stem cells need a chance to go where they’re needed and begin the repair process.

These bone marrow derived MSCs offer practical advantages for clinical therapeutic applications, since they can be obtained from the adult bone marrow and therefore the patient can be the donor for himself, without any danger for rejection of the cells. In addition, MSCs carry a safer profile and are less prone to malignant transformation.

 

Here is the Wikipedia link if needed to decipher any of the above info:

(I sure have been using it a lot these last few months)

http://en.wikipedia.org/wiki/Main_Page

 

Be Well

Todd

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