I spoke with Dr. Riordan yesterday. I found him very open and willing to discuss his work.

To date he has performed the cell transplant procedure on three young adults with Duchenne. Ryan is 23. Another young man was 28. The procedure was considiered Compassionate use.

Dr. Riordan is using MSCs (human mesenchymal stem cells). The origin of these cells is from bone marrow donors, age 18-65 and/or umbilical cord cells. Dr. Riordan said there is greater potency of cells from young donors (18+) and /or cord cells. The cells are grown in culture and prepared for transplant. Adult derived cells are capable of 20/30 doublings. Umbilical cord derived -200 doublings. He suggested that there is significant data to suggest MSCs integrate well and become muscle cells. But what if the environment has more fat/fiber than muscle? What evidence do we have the the MSCs will become muscle? Is it possible, the MSCs could actually make things worse? These are my questions and will be discussed in the near future.

Dr. Riordan said none of the young men are on an immune suppression protocol, that they have had no problems with rejection.

Ryan's biopsy was peformed in his home state, Dystrophin testing was done by Athena. Dr. Riordan thought the biopsy was done on the Quadriceps muscle, but would need to check.

Strength testing pre and post was done by physical therapists at the Stem Cell facility. Dr. Riordan did not have methods of testing, nor the pre and post testing available for the call.
Dr. Riordan is not accepting patients at this time. The procedure is quite expensive, in the neighborhood of $100,000 and the three young men who received stem cells were done at no charge. Dr. Riordan is interested in developing collaborations and clinical trials with academic centers.

Dr. Riordan is kind and genuinely interested in understanding the potential of MSCs in DMD, but significant questions remain before we would be able to jump on this bandwagon. Dr. Riordan was leaving Costa Rica today and will be traveling for a few days. We agreed, I would connect with Lee Sweeney and Gillian Butler Browne to schedule a conference call.

More on this in the next days/weeks.


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Comment by Pat Furlong on February 22, 2010 at 5:31pm
Hello Melissa, This has not slipped our mind. At the moment, we are all in DC with the advocacy conference. Once the dust settles from this, Sharon will work to connect with Dr. Riordan.

Comment by Pat Furlong on December 29, 2009 at 10:09pm
Hello Melissa. We have not forgotten. Lee Sweeney and our new director of research are meeting next weekend. This is on the agenda, so an update will be coming in January.

Comment by Pat Furlong on December 6, 2009 at 5:46pm
Hi Melissa, We have not forgotten. Lee is currently presenting at a meeting on Stem cells in San Diego. He is planning on connecting. What would be interesting is to hear from the other families /young men as well. Keep in mind, three men had the procedure.
Comment by cheryl cliff on December 6, 2009 at 3:49pm
Any word on the conference call that was to take place?

Comment by Pat Furlong on November 15, 2009 at 9:23am
Ryan will post an interesting article tomorrow on 'backdoor' stem cell transplantation. I'm not suggesting Dr. Riordan or Dr. Rao are not credible, only that there are any number of stem cell therapies suggested to be helpful that target vulnerable families.
I understand this is very difficult and that each minute matters in DMD, but subjecting our boys to procedures that may harm or financial disaster and provide no benefit whatsoever.
Comment by Tulika on November 15, 2009 at 12:27am
100,000 is a lot for this procedure.

There is a hospital (relatively unknown) in Bangalore India which is claiming the same success with mesenchymal SC. In this case they have only clinical proof and no biopsy results. The contact information for these folks is at http://www.cryostemcell.org/contact.html

The lead researcher Dr. Gururaj Rao is available on his cell phone (+91-9632223805 ) and open to personal meetings in Bangalore. The treatment offered by Cryostemcell is based on 5 injections of mesenchymal SC with the cycle being repeated every 3 to 6 months. The cost of each treatment of 5 injections is only INR 30000 (Indian Ruppes) or about USD 500

If you are exploring this line of treatments see if you can apply the same evaluation criterion to the treatment offered by Dr. Rao (+91-9632223805 ).
Comment by Martin Daniel on November 12, 2009 at 9:03pm
Pat, I share your skepticism. Who is this fellow, Riordan? Alot of details seem absent.

Hoping for the best, but that MDA host seemed like she didn't do her home work. I only heard the guy say 3 or 4 words.

Matthew's dad.
Comment by cheryl cliff on November 12, 2009 at 9:24am
We will be waiting for more information on your communications with Dr Riordan. Extremely happy you are speaking to this doc since it should help clear things one way or the other. Information such as his news release can be misleading sometimes and we need solid ground on which to plant hope. Especially at this poignant time when so many different therapies/treatments/potential cures are in the mix and it really seems as though DMD is on it's way out.

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