Thank You

We just wanted to thank everyone who has prayed for not only our father, but for our entire family. We love you all, and are thankful for all you have done. While we all miss our father every second of every day, we are comforted in knowing where he is and what he is doing. We are thankful for the knowledge that we have of eternal families, and that we will be with dad again one day. Thank you, again, to EVERYONE!

SB-509 A Possible Miracle Drug?

Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance or a 1-percent chance, but you have to believe, and you have to fight.
- Lance Armstrong

We have found a very promising new clinical trial substance! It's called SB-509, an injectable drug created by Sangamo Biosciences. This clinical trial will be conducted via four different organizations, all working in conjunction with each other. This team consists of The California Pacific Medical Institute, Johns Hopkins University, The University of Kansas Medical Center and The Coordinated Clinical Research Center.

Dad was the second person added on the short-list of 40 people to receive this treatment. We have preliminarily elected to receive treatment in La Jolla, California at The Coordinated Clinical Research Center.

So what is SB-509? It's the most promising drug we've seen so far and we are very excited about its possibilities. Here is the the official explanation of what SB-509 researchers are looking to achieve with this study followed by a detailed expalation of the drug itself:

"Primary Outcome Measures:

• To evaluate the effect of SB-509 on progression of the disease in subjects with ALS, as measured by the ALS Functional Rating Scale -Revised (ALSFRS-R). [ Time Frame: 11 months ] [ Designated as safety issue: No ]
  

Secondary Outcome Measures:

• To evaluate a) the effect of SB-509 on Forced Vital Capacity, Neurophysiologic Index, Manual Muscle Test, and survival. b) safety and tolerability of SB-509 in ALS. c) stem cell mobilization in subjects with ALS receiving SB-509. [ Time Frame: 11 months ] [ Designated as safety issue: Yes ]"
  

"SB-509 contains the gene (DNA—a kind of biological "blueprint") for a protein. When a study doctor injects SB-509 into the muscles of your neck, arms and legs, the drug enters the muscle and nerve cells around the injection sites and causes these cells to make a protein. This protein causes your cells to increase production of one of your own protein called vascular endothelial growth factor(VEGF-A), which may improve the structure and function of nerves and muscles. In addition, there are changes in the levels of 28 additional proteins in your cells. These proteins function to promote the growth of cells, are structures in cells, help synthesize products, and affect immune cells, and some have unknown functions. This increase in your own VEGF proteins may protect and repair the damaged nerves and muscles caused by ALS." - http://clinicaltrials.gov/ct2/show/NCT00748501?term=als&rank=1

Part of our excitement about this trial is that it is currently in Phase II, which means it has proved itself through a first phase and that there will be no placebo group in the second phase! Dad will receive the actual drug!

Dad has met all the inclusion requirements and possesses none of the exclusionary criteria for this study and therefore, with his recent acceptance to the trial, has an appointment on October 8th at 10 AM in La Jolla to sign consent forms and begin preparation for his participation in this promising and exciting trial.

Through lengthy conversations with several senior members of staff at virtually all the participating centers, we have seen excitement and optimism from all of them. This is not usually normal with staff members involved in clinical trials. We feel there is real promise with this new drug and we have a feeling that they do as well.

We have appreciated all of your thoughts and prayers. We have seen the benefits of them on countless occasions. Please continue to join our family with your continued faith, prayers and support. Especially the prayers. We know they have been heard.

We have new forms of hope coming often and it certainly seems as if this is one of the best options we have so far. Our feelings about this have been strong.

Let's keep the prayers coming. Three cheers of SB-509! This just may work!

Dad's back from Cologne, Germany!!!!

After an 11 day trip, Dad, Mom and Cameron returned home from Germany. The procedure went very well. Although it was a tiring trip, requiring 24 hours of strait travel both ways, Dad's strength is good and he remains in high spirits.

It was a blessing for him to be accompanied by Mom and Cameron. It was a long trip and boredom took over for them on several occasions.

The Doctor there really knows his stuff and we as a family feel really good about him. Dad was told that he should return in three months if he feels minimal difference and six months if he there is any significant change.

Let's all keep this in our daily prayers that a change will take effect and that they won't need to return to Germany for six months.

To echo Carli's post, we would all like to extend our most sincere gratitude for fasting and praying with us. We have a lot of faith and we believe that the more prayers and effort that is extend by us, the better.

We are amazed at the tremendous amounts of love and support that we have seen for our father, who is such a great man. Please help in keeping up the research and posting away.

We love you all and can't possibly express our thanks for everyone in words.

THANK YOU!

We just wanted to thank EVERYONE who joined us in fasting and in prayer this last week. We are so greatful for all of your love and support-we truly do feel it everyday.

We are in constant awe at how many of you love our father and in how many lives he has touched. We wish we could personally thank each and every person who has thought of, prayed for, and fasted for Dad.

Dad's procedure in Germany went well. We remain optomistic about the outcome. They will be home tomorrow night, and we will continue to keep everyone updated.

THANK YOU, AGAIN, FOR YOUR LOVE AND SUPPORT!

Dad leaves for Germany on the 23rd!

Dad, Mom and Cameron will be departing for Germany on Saturday the 23rd for Dad's second round of Stem Cell Treatments. They will return late on Tuesday the 2nd of September.

While he is undergoing the actual procedure we will all be fasting on Thursday the 28th at 6 pm through Friday the 29th at 6 pm. We know that there is a lot of power in this and we ask that all of you who read this blog will participate in this fast. Everything helps.

We love you all so much for your support and thank you from the bottom of our hearts.

-The Gordon Family

If anyone has any questions about any of this please direct them to me.

Chaston Gordon

cgordon@omniture.com
801.787.0338

This statistic was taken from a recent CNN pole

Keeping the Faith - I guess we are not the only ones. (Click on the title of this post for the actual article).

More than half of randomly surveyed adults -- 57 percent -- said God's intervention could save a family member even if physicians declared treatment would be futile. And nearly three-quarters said patients have a right to demand that treatment continue.

BOO YA!!!! BREAKTHROUGH BABY!!!!

There may be a plan version 1.3 coming up!

We may have it here folks, some VERY promising information, can anyone say breakthrough?

The following information was made public just a few days prior to this post.


The Independent, 1 August 2008 "Stem-cell advance for motor neurone disease":

"Scientists have succeeded in transforming skin cells from two sisters with motor neurone disease into the same kind of nerve cells being destroyed by their illness, raising the possibility that the new cells can be transplanted back into them to offset the degenerative condition. In a major breakthrough, the skin cells of the two women, aged 82 and 89, were turned into mature nerve cells. The achievement promises to revolutionize the understanding and treatment of a range of incurable illnesses. The skin cells were genetically altered by a laboratory technique that "reprogrammed" them back to their original embryonic state, before being grown into the specialized motor neurons that carry signals from brain to muscles."

The more complete article can be found at examhealth.com which is just one site of many credible sources that have reported on this.

Plan A becomes Plan 1.2

So I guess we should change "Plan A" to plan 1.2!

Here's the new plan:

*Continuing with Stem Cell Treatment
- Dad will be in Germany for the second round (and second type) of stem Cell Treatment by August 24th of this month. The Xcell Clinic will harvest cells from his bone marrow on the 25th. There will be a 4 day period where his cells will need to be separated and "Seasoned". On the 5th day these cells will be injected into his spinal column (like an epidural) allowing the cells to travel to affected areas via cerebral fluids. He will rest for a day or two and and he's back home before we know it.

- Stem Cell treatment will continue in a round-robin type cycle. Every 3 to 6 months he will return (most likely to Germany) to repeat this process. The obvious reason for this is that the more cells the better.


*Acupuncture Treatment
- Today Dad went in to his first treatment to the Mc Lean Clinic. We were there for a good amount of time. We first consulted with Dr. Matthew Mc Lean on the benefits of acupuncture. He advised us that this is no regular acupuncture method. We decided to add another element....a small electrical current. This enhances the process. We then determined that he will receive acupuncture treatment 3 times a week

- His first session occurred directly after the consultation. There Dad was for with needles firmly placed from the top of his head to the base of his back with an electrical current running through his body for 20 minutes. The needles were then taken out and the current was left on for another 45 minutes. When this process was completed, you should have seen it, Dad walked out of the clinic walking more upright and with A LOT more pep in his step. It seemed to give him more energy and he even moved at a quicker pace. I loved seeing such amazing results after just one visit. I can't wait to see what happens when he goes 3 times a week! I am now officially a believer.


*The Diet Changes But the Supplements Don't
- We were advised by professionals at this point to stop using all the slim and trim organic stuff. We now understand that weight loss has a correlation with speed of digression. So we are going to get Dad eating more like a MAN. He will have a new diet of hearty, let's say, more tasty meals. I can personally vouch for the fact that he is not complaining about this change. He will however keep using supplements. These can only help.


*The Use of Rilutek and Lithium
- Rilutek or (Riluzole tablets)is the first and basically only drug approved by the FDA for the treatment of ALS. This glutamate-blocking drug has been proven effective in well-controlled studies using survival as an end point. With a combination of lithium, symptoms are often seen slower and to a lesser degree. The use of this combination will begin immediately.


*Clinical Trials
- We are investigating several Clinical Trials that are available. We have been in contact with The Robert Packard Center for ALS Research at Johns Hopkins in Maryland. There is also an option that is bit closer to home that offers the same studies. The California Pacific Medical Center seems great as well. These are the big players in clinical trial ALS research. Dad will undoubtedly be participating in trials that include treatments ranging from high dosage antibiotics, new drugs at the clinical level, drugs that are awaiting approval for the trial stage (that appear to be quite promising) and even high-frequency far infrared irradiation in Canada. We will researching and selecting several options in this area.

*Keeping the Faith and Staying on our Knees
- Enough said on that topic. That's the X factor here. We REALLY appreciate your participation in this part of the plan.

We will be sure to keep you constantly updated.

Any feedback would very much appreciated. Please post away.

On Behalf Of Our Family...

We just want to thank everybody for your thoughts and prayers. It means more to us than you'll ever know! We are excited and hopeful with all that is happening. There are so many opportunities that are arising for our dad, and we know that with each procedure comes even more hope.

Our father is such a strong man, both inside and out. He has touched so many lives. We thank everyone, again, for your love, support, thoughts, and prayers. Let's keep the research going!

They're Baaaaaack!!!!

******UPDATE

Mom and Dad arrived Late last night from the Dominican Republic. Dad looks well and the first round of Stem Cell Treatment is complete!

Next stop.....Cologne, Germany. He is scheduled for treatment starting August 24th through the 28th.

We will be starting acupuncture this week too and we will continue that type of therapy until his departure to Germany.

Plan A

This post will be a basic breakdown of our "A" plan, Dad gets home on the July 28th, a few weeks later he will be going to Xcell Treatment Center in Cologne, Germany for bone marrow cell treatment.

He will continue a strict diet of holistic and organic foods and supplements. After Germany, a short break will be taken at home where he will begin acupuncture and rest. We are strongly considering treatment in China as well. There will be a need for a "round-robin" of treatments so we seek to find the best one.

Any feedback on this plan would be much appreciated.

China's answer to ALS

I have been pursued frequently by a very friendly Dr. Ming ant TCMTreatment Center in China. This is the page for their answer and treatment to ALS. Click the link below and leave some feedback.

CLICK HERE TO VIEW THE CHINA TCMTreatment Center's ALS PAGE

Acupuncture Information

Ok folks, like I said, I know this seems strange (at least to me anyway), but click on the title of this post, read the information and let's leave some posts. There is someone here in Provo that practices this very treatment.

I'd like to know what you think about acupuncture treatment. My personal opinion.....everything helps. Do all that you can. Let's get some feedback on this one though.

The Shotgun Trip to the Dominican Republic

**Click on the title of this post to go to the Medra Clinic's official website.

This morning we received a phone call that changed our decisions. A representative from the Medra Clinic in Malibu, California reached out to our family with some very promising information. She put us in touch with Dr. William C. Rader who spoke directly with my father.

The Medra Clinic is based out of Malibu but its stem cell treatment facilities are located in the Dominican Republic. Dr. Rader detailed a treatment plan that is far more effective than any we've seen.

The travel arrangements have already been made and my father's case is being treated with the upmost of urgency; he leaves this week! His first treatment will occur on Saturday, July 26th. Since there is a need for this special, more effective treatment in the earlier ALS stages, we are thrilled with the timing of this event.

We will keep you updated on our father's progress after this procedure.

Part of our own after-care plans are a stringent nutritional plan with a focus on immunology and possibly acupuncture. Now if you are anything like me, you're thinking acupuncture......what?

There have been studies indicating the success of acupuncture in ALS patients. I will post more information on this shortly.

Our confidence is high, but we still appreciate your prayers.

A little about Stem Cell Treatment

There is a huge and widespread interest in the ALS community in stem cell therapy, both in how it is helping people with ALS today and how it may benefit ALS patients in the future. As with any new scientific procedure, stem cell therapy or surgery is controversial, both in terms of moral issues and in terms of effectiveness.

Stem cells have the ability to divide indefinitely and give rise to multiple specialized cells. For instance, they can develop into muscle, brain, blood, skin, and organ tissues. Embryonic stem cells are undifferentiated and have the ability to form any adult cell.

How Stem Cell Therapy Can Help The Healing Process

When stem cells are injected intravenously, intramuscularly or subcutaneously, they travel to those parts of the body that have suffered from some type of injury. As they grow in their new environment, they become similar to those cells that they come in contact with. In this way they are able to transform into new blood vessels, neurons, muscle, pancreas, liver, bone marrow, and so on, any tissue or organ that they come into contact with.

Our Germany Contact Called!!!!!!

Our North American contact for the famed Xcell Treatment Center (Stem Cell Treatment Center) in Germany called us back today after a nail-biting wait. Apparently, they get a little busy. Our contact told us that the head Physician in Germany is doing some final checks on Greg's medical records, that the process is being expedited and chances are good that he will be in Germany by the end of this month getting treatment!

This is great news about a treatment that we are very confident in. This news came at just the right time and WE ARE THRILLED!!!

We will certainly keep you posted on this folks. Thanks for all your thoughts and prayers so far. They are obviously working so keep 'em up, we appreciate you more than you know.

Stem Cell Informational Video Link

Be sure to click on the Stem Cell Therapy Video link.

Stem cells, the source of all cells in the body, have the intriguing ability both to self-renew and to transform themselves into specialized cell types. For this reason, stem cells hold great promise in treating brain disease in which large numbers of nerve cells are lost. CLICK HERE TO VIEW STEM CELL THERAPY VIDEO In 1999, Project A.L.S. pioneered the use of stem cells in ALS research. Now, in the space of seven years, the Project A.L.S. stem cell team has achieved several milestones.

Therapy - Between Hopes and Fears

The “Deutsche Apotheker Zeitung” has published an article concerning stem cell therapies. In this article, the difference between embryonic stem cells and adult stem cells is stated by saying that working with adult stem cells is ethically inoffensive and they cause nearly no side-effects. A lot of different diseases can be healed with adult stem cells and the important advantage is that the normal physiological processes that were destroyed by a disease like stroke might get reconstructed.

All in all, this article states that therapies with adult stem cells are very promising and that they really offer new chances for patients.

Bone marrow stem cells can do more than previously assumed

This is why we chose the Xcell-Treatment Center in Germany

Bone marrow stem cells promote the continuous replenishment of blood cells.
And that's not all they can do, according to a recent study published in the "Cell" magazine.

A research team at the Harvard Medical School in the USA, headed by Ulrich von Andrian, conducted tests on mice which suggest that bone marrow stem cells have a direct impact on maintaining body health. The research team proved that the stem cells can travel from the bone marrow, through the blood system, and enter visceral organs where they perform reconnaissance missions in search of pathogenic invaders. Upon encountering bacteria or viruses, for example, they immediately divide and mature, producing new immune system cells.

Click here to read the entire report.

39 Million Dollars Dontated to ALS Research.

I read this on another blog and wanted to let you know that some friends just received a letter from the U.S. Senate stating that they are donating 39 Million dollars towards ALS research. Amazing huh?

Not to long ago they created petition letters that they took around and got as many people as they could to sign them and then they were shipped of with a guy named Allen and his wife to Washington DC to try to get money donated to research. They were asking for 5 million dollars and come to find out they got 39 Million. They are so excited and hope that this will finally be the donation that will find a cure.

I am currently talking to these great people to find more information about this. More to come on this topic. IT AMAZED ME WHAT THE EFFORT OF THE FEW CAN DO FOR THE MANY. This is inspiring.

Alternative methods until the serious stuff

Hi everyone we just wanted to tell everyone some of the great supplements out there that have been of great help to many. According to research that has been done it is really working miracles.

Here is the link:

http://www.4life.com/transferfactor.aspx

Our Top Choice For a Treatment Center

We have decided to seriously consider Stem Cell Treatment in Germany at the Xcell Treatment Center.

The following was an email return I received after a request for more information. I highly suggest downloading the link contained therein, it gives great information about the disease and the procedure itself. This was the document that gave me a good amount of hope.

Dear Mr. Gordon, 7/11/2008

We are proud to offer you our innovative adult stem cell treatments and we thank you very much for your interest.

The XCell-Center is Europe's first certified private stem cell treatment facility and is its leading adult stem cell therapy provider. Our clinical and laboratory standards are governed by the German Medical Act and European Union GMP regulations. These standards are on par with US FDA regulations.

At the XCell-Center, to best ensure the safety and success of every patient's care, each medical evaluation and stem cell procedure is performed by a team of German Medical Board certified physicians; among them are radiologists, diabetes specialists, neurosurgeons, cardiologists, ophthalmologists and pharmacologists. Together they have treated more than 750 patients and seen excellent results.

In response to your request, we have attached our treatment information brochure for Amyotrophic Lateral Sclerosis <http://www.xcell-center.com/mme/upload/Brochure_EN_ALS.pdf> , to this email. When you are ready to proceed with your free medical evaluation, we kindly ask that you complete the attached Medical Information Form <http://www.xcell-center.com/mme/upload/medical_information_form_uk.doc> , gather the medical data that is described in the brochure and email or fax these back to us. The use of autologous adult stem cells is free of ethical concerns; there is no risk of rejection or contamination with foreign viruses as with other stem cell sources.

Feel free to contact me any time if you have any questions or if you need any assistance.


Regards,

Mr. J.D. Lenner