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Permalink Reply by Dana Edwards on July 22, 2009 at 8:33pm

Hi Greg, My friend and I also inquired about Medra they call you right back and he is a Dr in California that does this in the Dominican. I asked for names and his experience with Duchenne kids. I wouldn't trust anything that sounds to good to be true with a tag of $30,000. I do want to see proof. Show me the proof not just a needle in a leg and hope for the best and my son will not be a guinee pig. I pray it is true and we have an option but I think this would be well known if it were. I think our doctors are close to having something to help our boys. I know every moment counts and its so hard to wait but i can't afford to lose my home and my son for a scam. Lets PRAY our doctors start moving their butts and start with the utrophin.

Dana

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Permalink Reply by Gregoris Panayiotou on July 23, 2009 at 12:57am

Dear Dana

I have contacted them both. Their answers are not to the point. When I asked them about other people treated, they came up with the excuse that these are personal data and they cannot give these to anyone. I agree 100% with you.
If there was such a miracle cure, then all parents would have known already. such news travel fast between the parents and communities of boys with DMD.

Thank again

Greg

Dana Edwards said:

Hi Greg, My friend and I also inquired about Medra they call you right back and he is a Dr in California that does this in the Dominican. I asked for names and his experience with Duchenne kids. I wouldn't trust anything that sounds to good to be true with a tag of $30,000. I do want to see proof. Show me the proof not just a needle in a leg and hope for the best and my son will not be a guinee pig. I pray it is true and we have an option but I think this would be well known if it were. I think our doctors are close to having something to help our boys. I know every moment counts and its so hard to wait but i can't afford to lose my home and my son for a scam. Lets PRAY our doctors start moving their butts and start with the utrophin.

Dana

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Permalink Reply by Eileen DeLong on July 24, 2009 at 12:05pm

Hi,
Just found this new article about a 4 year old showing improvement after undergoing stem cell treatment in the Dominican Republic.

http://www.thedailyobserver.ca/ArticleDisplay.aspx?e=1668829

Interesting

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Permalink Reply by cheryl cliff on July 25, 2009 at 7:22pm

Hi all,

After reading your post Greg my husband (an attorney in California) and I looked online further into this Medra, Inc. Dr Rader is listed as living in Malibu, California, and there are no disciplinary problems listed. However, this Medra, Inc. thing looks really suspicious. Our best guess is there is an extremely large potential of fraud. My husband said what they are claiming on their website would be illegal in the state of California, Dr Rader's license would be pulled. I suspect that is why the website doesn't have a mailing address or show a business office location. If you read his resume it doesn't really say anything conclusive nor does it look anything like an official resume for a doctor who functions legitimately.

His resume states he is a psychiatrist, a shrink...which has nothing to do with practicing medicine and using stem cells. Betty Ford Center would be shocked to know he is using them in an unethical way. Psychiatrists in the US do not venture into other medical specialties without being punished because they lack proper training to switch between fields.

My son is also 11 (as of next month) and I am with you...desparate for something to come along before it is too late. Stem cells might make it someday but I wouldn't put too much into the Medra thing. Essentially they claim to have treated 1500 kids - this translates to meaning they have defrauded 1500 families.

Keep your eyes out there tho, something may come up soon.
cheryl

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Permalink Reply by Gregoris Panayiotou on August 10, 2009 at 8:14am

Dear Cheryl

Thank you for the information!

In the mean time, after pushing Medra for proof, they gave me the e-mail of the parents of Brody (Erin and Dan) - the boy that is reffered to the article (http://www.thedailyobserver.ca/ArticleDisplay.aspx?e=1668829) and I have contacted them. They are very happy at the moment with Brody's improvement. I hope that Erin and Dan will keep in touch and update us on Brody's condition in the future. They are very kind and I thank them that they share this information.

Thanks again. I will keep you informed. At least we have a family that can share some information. I hope them the best for Brody. May this be the start of a new era for our boys.

Greg

cheryl cliff said:

Hi all,

After reading your post Greg my husband (an attorney in California) and I looked online further into this Medra, Inc. Dr Rader is listed as living in Malibu, California, and there are no disciplinary problems listed. However, this Medra, Inc. thing looks really suspicious. Our best guess is there is an extremely large potential of fraud. My husband said what they are claiming on their website would be illegal in the state of California, Dr Rader's license would be pulled. I suspect that is why the website doesn't have a mailing address or show a business office location. If you read his resume it doesn't really say anything conclusive nor does it look anything like an official resume for a doctor who functions legitimately.

His resume states he is a psychiatrist, a shrink...which has nothing to do with practicing medicine and using stem cells. Betty Ford Center would be shocked to know he is using them in an unethical way. Psychiatrists in the US do not venture into other medical specialties without being punished because they lack proper training to switch between fields.

My son is also 11 (as of next month) and I am with you...desparate for something to come along before it is too late. Stem cells might make it someday but I wouldn't put too much into the Medra thing. Essentially they claim to have treated 1500 kids - this translates to meaning they have defrauded 1500 families.

Keep your eyes out there tho, something may come up soon.
cheryl

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Permalink Reply by cheryl cliff on August 10, 2009 at 3:27pm

Greg-

Do you know where the family is from? Is their son being cared for by someone who specializes in duchenne and are they monitoring his progress with stem cells? I hope so. Wouldn't it be nice if something started to work...

keeping fingers crossed
cheryl

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Permalink Reply by Tulika on August 16, 2009 at 6:15am

Greg,
Medra and Emcell look to be garage run operations with websites being the primary face. There is one more chinese company,Bieke, which calims to have a treatment for DMD.

This is a large MNC and I did have long discussions with their India Operattions Head. Bieke is non commital on which stem cell they use, how do they purify them and how do they ensure no immune rejection. After all the reading and discussion at present it looks like just a very expensive booster shot. It will kick in for a few weeks and then wade off.

On the stem cell front the most promising approach has been given by ICE Project. Next report is due in Jan 2010. You can get more details PPMD site on the last publish by ICE. In my opinion this is the closest to a cure we will have atleast till the time we figure out how to manage the immune response against foreign stem cells.

Thx
Tulika

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