Stem Cell Therapy for Autism: John Guerriero Interview with Neil Riordan, PhD, PA

John Guerriero discusses the progress of his son Anthony with Neil Riordan, PhD, PA after undergoing stem cell therapy at the Stem Cell Institute in Panama City, Panama. Anthony was treated with human umbilical cord-derived mesenchymal stem cells. The umbilical cords were donated by mothers following normal, healthy births.

Stem Cell Thearpy for Autism – Interview with Stephen Lallo and Neil Riordan, PhD, PA

Stephen Lallo discusses his son Jack’s improvements after undergoing stem cell therapy at the Stem Cell Institute in Panama City, Panama. The treatments us human umbilical cord tissue-derived mesenchymal stem cells. The umbilical cords are donated by mothers following normal, healthy births.

Stem Cell Therapy for Cerebral Palsy – Sofia O.

My name is Maria, I’m Sofia’s mom, and this is my husband Sean, and that’s Sofia!

Sofia suffered a lack of oxygen at birth and has cerebral palsy because of it, so it’s a middle-grade injury.

We’ve been here last year for the stem cell treatment and she showed immediate improvement. Her circulation improved. She used to have purple toes and that stopped since the last treatment. Her vision improved. Her far-away vision last year, and this year she has reported to us that she has more sensation in the body, her hearing… like, last night we went out and she didn’t need the headphones. She was okay.

She wasn’t bothered by the noise from the traffic. She was much better, looser, and happier.

And definitely, she also reported that her vision improved even further. She was able to describe the colors of the cars, birds that she saw from the 24th floor.

And today, she says she doesn’t have pain in her arms and stomach anymore, so she feels looser and more comfortable.

How Stem Cell Therapy Saved My Son

autism_hope_alliance_web_liogo_copy

By Susie Reveles September 11, 2016
View Original Interview

Interview with Marty Kelley – Mother, Wife and Stem Cell Advocate

kelley-family-in-panama
She fought for her son and won. She never gave up and followed her instincts. Her message is one of Hope, Determination and Unconditional Love. The Autism Hope Alliance had the pleasure of learning more about her journey and hearing her story.

Autism Hope Alliance:

Can you tell us what is Stem Cell Therapy and why you are so passionate about it?

Marty Kelley:

We received stem cell therapy at the Stem Cell Institute in Panama, which is where all of Ken’s treatments have taken place, they use stem cells harvested from donated human umbilical cord tissue after normal, healthy births called mesenchymal stem cells (MSCs). Umbilical cord tissue is a rich source of the most potent MSCs, which modulate the immune system and possess anti-inflammatory properties. Each donating mother is tested for infectious diseases and has her medical history screened. Proper consent is received from each family prior to donation. Before they are approved for use in treatment all umbilical cord-derived stem cells are screened for infectious diseases to International Blood Bank Standards. Only a small percentage of donated umbilical cords pass the rigorous screening process.

The actual treatments are relatively simple. There are just several quick intravenous injections of the purified MSCs over the course of several days. Each injection only takes a few minutes. Autism (and its degree of severity) has been significantly correlated with elevated levels of macrophage-derived cytokines (MDC) and thymus and activation-regulated chemokine (TARC), both of which are implicated in neuro-inflammation. Intravenous administration of umbilical cord MSCs can reduce inflammation in the brain and throughout the body, thus lowering the levels of MDC and TARC and improving a child’s symptoms. This is the rationale behind the treatment, which is currently in the process of being tested in controlled clinical trials.

Autism Hope Alliance:

What changes if any did you see in your son after doing it?

Marty Kelley:

After doing our first stem cell treatment, Kenneth started talking about the past for the first time! Within a few months, he was able to have simple conversation and at nine months after the cells, Kenneth potty trained and started reading. It was a few months before his ninth birthday.

ken-kelley-with-dog

Autism Hope Alliance:

How long before you noticed any changes?

Marty Kelley:

Before stem cells, my husband and I categorized Ken as moderately to severely autistic. So, it was while we at the Stem Cell Institute getting our first stem cell treatment, where Ken started speaking clearer and adding more words to his limited sentences, we knew the cells were working. Changes continued to occur daily, such as Ken having a concept of time, describing his trip to Panama as “four hours in the car and 8 hours on the plane” in a news interview 2 weeks after getting cells!

Autism Hope Alliance:

What therapies did you do before trying Stem Cell Therapy?

Marty Kelley:

Like most parents on this journey, we tried biomedical intervention intensively before stem cells, starting when Ken was 6 years old. We bought a mild hyperbaric oxygen chamber for our home and treated him for two years with 900 hours of dives. Also, we used around 30 different vitamin supplements as well as the Specific Carbohydrate Diet, along with fermented foods. We used the top autism biomedical doctors at the time (2006-2009), including having Ken’s gastrointestinal issues diagnosed with Dr. Arthur Krigsman at Thoughtful House and QEEG scans to give us markers for improvements.

Autism Hope Alliance:

How did you even hear about stem cell therapy and how did you decide on the clinic to go to?

Marty Kelley:

A news story in Orlando, Florida, introduced us to stem cell therapy and Daniel Faiella, a father who had treated his son at the Stem Cell Institute. I called Daniel every day for two years while I researched adult stem cells. It was still hard to decide on a clinic to use. I chose the Stem Cell Institute because of their reputation and what I researched. And a great quote that sums it all up is, “You cannot always wait for the perfect time, sometimes you must dare to jump.” As long as I was sure that umbilical cord cells would not cause any harm, it was just a matter of taking the “jump.”

Autism Hope Alliance:

Where was your child before Stem Cell Therapy?

Marty Kelley:

Before stem cells, Kenneth was out of control. He could not have a conversation with us. He could not tell us spontaneous things, like what happened at school, if he was sick or hurt, or things he needed. Ken often screamed and yelled and was violent and threw things and would run awayfrom us, ripping his clothes off, running naked. At the time, our physician did not know anything about stem cells, but recommended that we place Ken in an institution because of his out of control behavior. This devastated us.

In a documentary film featuring Ken’s story, we tried to capture the essence of Ken’s life before stem cells and then show the changes from the cells. This film is called Ken’s Journey To Recovery and can be viewed on YouTube at https://www.youtube.com/watch?v=-FaGf0h20Vw

Autism Hope Alliance:

Paint us a picture of where he is today?

ken-kelley-today

Marty Kelley:

Today, Ken is calm, peaceful, and polite–the sweetest joy in our lives. He is what life should be, happy and caring and intuitive. Ken has a passion for learning, I think because of all of the gaps with the autism. Even his teachers recognize his passion and he recently received an award in History in a mainstream classroom out of 70 neuro-typical peers.

Autism Hope Alliance:

How many stem cell treatments did he get and do you do any therapies with him currently?

Marty Kelley:

From 2009 to 2012, Ken has had six stem cell treatments. We have not had him on any diet or supplements since 2012. Our lives are very normal with limited therapies, except for speech therapy and school. We have not done any biomedical since 2009.

ken-kelley-at-fair

Autism Hope Alliance:

What advice would you give to someone who is thinking of doing Stem Cell Therapy?

Marty Kelley:

If parents were considering stem cells for their child, I would recommend lots of research. Make sure you know that the treatment is safe and find a clinic with a good reputation. And don’t wait. Stem cells are amazing, but, like any medical treatment, it doesn’t work for everyone. For your child, however, it may be worth a try.

“Dream big dreams, small dreams have no magic”

For more info:

www.KensJourneyToRecovery.Blogspot.com

https://www.facebook.com/marty.kelley.9

https://www.youtube.com/watch?v=-FaGf0h20Vw

https://www.youtube.com/watch?v=B6T9MZYM_wY

https://www.youtube.com/watch?v=jyU4m2ZF-pA

https://www.youtube.com/watch?v=csJGUbonU4k

*This interview is not intended to diagnose, treat, cure or prevent any disease. It is for informational purposes only. Each parent knows their child the best and we recommend individuals to consult their doctor before considering any therapy or treatments.

FDA DRAFT STEM CELL GUIDANCE DOCUMENTS EXPOSED AS IMPROPER RULEMAKING, BAD SCIENCE AND HEARTLESS PUBLIC POLICY

Go to Original Post on RickJaffe.com

FDA-NotApprovedStampToday was a good day for people who want continued access stem cells outside of clinic trials, and also for people who want the FDA to allow faster access to this promising technology.

There was a wide spectrum of opinions. Some stem cell companies involved in clinical trials wanted the non-clinical trials clinics shut down. But at least there were representatives from some of these “unproven” clinics and interest groups who made some important points about the rights of patients and how the needs of patients are not being met by the current clinical trials model as it applies to stem cells. I heard a number like 250,000 people are not getting the stem cell treatments they need because of clogged research and regulatory hold-ups. There were numerous calls from very serious, highly credentialed people for the FDA loosen its death grip (my term) restricting access to these therapies, and the thrust of most of these presenters was that these draft guidance documents make thinks much worse.

The guidance documents are really bad and deny access for many

And that was the big takeaway for me; that the guidelines were much, much worse than even I thought. I understood that the guidelines would make illegal the 21 CFR 1271.15 exempt same surgical procedures provided by many of the 600 plus unregulated stem cell clinics.

But what I didn’t understand until Monday’s hearing is that the FDA intends to radically change the rules so that, for example, the most popular form of breast reconstruction surgery post mastectomy (flap something) would become illegal under the new guidelines. Many other popular and widely successful procedures in other areas like orthopedics would be eliminated (outside of clinical trials). We’re not talking unboarded docs with no relevant experience who take a weekend course and starts shooting people up with stem cells. We’re talking about big-time breast reconstructive surgeons, highly regarded orthopedists and other highly skilled and specialized physicians who have successfully worked with tens of thousands of patients. If the FDA gets its way, according to these folks, Poof! These best practices transplant procedures are gone.

Fortunately, there were some very smart professionals making presentations, including an extremely knowledgeable law professor from Boston College, Mary Ann Chirba. She and several other people with regulatory expertise made the case that this whole guidance exercise was an illegitimate attempt to pass new rules without complying with the rulemaking requirements under federal law. Works for me!

They and others honed in on the radical revisions to the two key preexisting terms/concepts used by the FDA to work its illegal magic: homologous use and more than minimal manipulation.

What’s a “main function?”

It was also pointed out that the guidance documents invented a new concept not existing in the statute or rule, namely the “main function” of a cell or HCT/P which is used as a way of forcing stem cell procedures from just registration under 362 into the IND/NDA drug approval path. It was argued persuasively by several regulatory experts that the creation of this new concept and its resulting transfer of many heretofore legal uses of stem cells into illegal new drug products turns the guidance documents into rulemaking without following federal administrative rulemaking procedures.

The FDA doesn’t understand what fat does

Another extremely cogent criticism made by a variety of people including Professor Chirba, other regulators and by both of the two top presenting stem cell researchers, Arnold Caplan and Keith March had to do with the FDA’s view of fat. According to the guidance documents, fat just has a structural function. But these presenters and especially March and Caplan showed that the FDA’s view was biologically unsound. Fat has definite, known and extremely important non-structural uses, starting with energy storage and continuing to assistance in the healing function. The FDA’s unscientific, unsubstantiated restriction on fat allows it to find most of the important uses of fat and fat stem cells illegal as either non-homologous or as a more than minimally manipulated product. The FDA was absolutely and repeatedly pummeled on this point by my count, at least a half dozen very, smart experts. I don’t see how even the FDA, which has a very particular agenda, is going to be able to hold on to its limitations/restrictions on fat/adipose tissue.

The Big Guys say regulations are holding back progress

The two big-time researchers (Caplan and March) also made the point that the regulatory climate is holding back research. Kaplan said that some bone marrow pioneers had observed that if they had the regulatory environment back then as what exists today, bone marrow transplants might never have taken off. Ouch!

Interestingly, Peter Rubin, the plastic surgeon who last Thursday presented the inspiring cases of reconstruction work from fat transfers, presented again. This time he was more critical of the FDA and stated that many of the most successful reconstructive plastic surgery procedures, including breast reconstruction would become illegal under the draft guidance documents. He and many other excoriated the draft homologous document which classifies fat tissue for breast reconstruction as non-homologous because the primary purpose of the breast is lactation. Several of the female presenters had some polite but pointed words to the FDA about that. Most of the day’s presenters agreed that regulation/regulatory expense was delaying bringing this technology to patients.

The 3 Billion Dollar Player Weighs-in

The biggest dollar player was the California Stem Cell Institute which has a 3 billion dollar budget and 12 research centers. Its director spoke, and his message was clear, concise and right on the money (and with 3 billion, it should be). The FDA has to loosen-up its grip and find an intermediate path between unregulated stem cell clinics and full-on clinical trials, because there is a desperate unsatisfied need and that need will be satisfied – just as water flowing down a hill will find a path – with or without the FDA’s help. He was very persuasive. Reminds me of an old TV ad: “When EF Hutton talks, people listen.”

Interestingly, no one picked up on what I though was the most egregious over reach in the draft guidelines, namely that the FDA tacitly incorporated or read the homologous and more than minimally manipulated requirements from registration facilities (1270.10) into the exemption for same surgical procedures (1271.15). Under the actual rule (1271.15) same day surgical procedures can do non-homologous and more than minimally manipulation. At least those two terms are not in that rule. Legal Method 101 says that if terms are in 1271.10 but not in 1271.15, then they’re in in 1271.15. (Maybe too technical. I’ll have more to say about that another time.)

Maybe there is a viable lawsuit

Something else I realized as a result of a couple of the astute presentations. I said in the last post that you can’t sue on a guidance document because it’s just the agency’s “current thinking.” However, if a guidance document is really disguised rulemaking without meeting the rule changing requirements, then maybe there is a lawsuit. Many presenters were clear about the fact that these guidance documents are disguised rule changes, so I’m now more optimistic about the chances of a legal challenge.

People are Mad and are going to do something about it

And speaking of possible legal challenges, while all of the presenters were very professional, very cordial, ostensibly courteous and complimentary to the FDA panel members on the dais, I sensed that quite a few, many in fact, were pretty upset by what the FDA is trying to do with the draft guidance documents.

So here is my prediction/wish/what I hope to make happen. There won’t be one lawsuit filed if the draft guidelines go into effect. There will many lawsuits. I don’t think these folks are going to go quietly. My sense is that the big players, sophisticated players, like Rubin, the fellow who started a society and has 5800 members, the guy with dozens of clinics, they have seen too many good results to give up their most effective tools. All these guys either run or are closely connected to prestigious professional societies and I predict that many of them are going to try to stop these guidance documents, in court or in Congress.

I hope for everyone’s sake the FDA really listened today, because people are mad as hell and there not going to take it. They want better and quicker access to this new technology, and my hope is they will get it.

Rick Jaffe, Esq.

www.rickjaffe.com

Stem cell pioneer sets sights on Japan – Japan Times features Neil Riordan, PhD of Medistem Panama

Japan Times Article Medistem

“We enjoy the advantage of having a large amount of clinical data on 2,000 patients. So we analyzed who received which cells and which cells worked best in different conditions. This allowed us to create our selection process through molecular profiling,” explained Medistem (Panama) Founder and CEO Dr. Neil Riordan.

Operating what is arguably the country’s most advanced laboratory, an 8,000-sq-ft facility in the City of Knowledge science and technology cluster, Medistem has raised its profile in recent years as it develops stem cell-based products for clinical trials for treatment of autism, asthma, multiple sclerosis, osteoarthritis, rheumatoid arthritis and spinal cord injuries.

Utilizing its patented technologies, Medistem harvests human adult stem cells from umbilical cords, tissues and blood as well as from bone marrow and adipose tissue. “We have intellectual property on a methodology for basically defining which are good cells, which are mediocre and which are the useless ones. The U.S. Food and Drug Administration has approved our cells for compassionate use in the United States. This is a big step,” Riordan said.

Compassionate use, also known as expanded access, refers to the use of investigational new drugs outside of a clinical trial by patients with serious, life-threatening conditions. After finishing its first prospective clinical trial, and with six others in the pipeline, the company is considering the favorable regulatory conditions for cell therapy in Japan, now a promising market for its products.

“Japan has a law on the books that allows a company of our size to commercialize such products. That makes it our number one priority. We are gearing up to present our data to regulators, as well holding talks with potential partners over there,” Riordan added.

Umbilical Cord Tissue Mesenchymal Stem Cells Best For Clinical Applications

A recent study concluded that umbilical cord tissue is the best source for clinically utilizable mesenchymal stem cells.

Comparative Characterization of Cells from the Various Compartments of the Human Umbilical Cord Shows that the Wharton’s Jelly Compartment Provides the Best Source of Clinically Utilizable Mesenchymal Stem Cells.


Arjunan Subramanian, Chui-Yee Fong, Arijit Biswas, Ariff Bongso

Department of Obstetrics and Gynaecology, Yong Loo Lin School of Medicine, National University Health System, National University of Singapore, Kent Ridge, Singapore, 119228, Singapore

Mesenchymal Stem Cell Harvesting Picture

Abstract

The human umbilical cord (UC) is an attractive source of mesenchymal stem cells (MSCs) with unique advantages over other MSC sources. They have been isolated from different compartments of the UC but there has been no rigorous comparison to identify the compartment with the best clinical utility. We compared the histology, fresh and cultured cell numbers,morphology, proliferation, viability, stemness characteristics and differentiation potential of cells from the amnion (AM), subamnion (SA), perivascular (PV), Wharton’s jelly (WJ) and mixed cord (MC) of five UCs. The WJ occupied the largest area in the UC from which 4.61 ± 0.57 x 106 /cm fresh cells could be isolated without culture compared to AM, SA, PV and MC that required culture. The WJ and PV had significantly lesser CD40+ non-stem cell contaminants (26-27%) compared to SA, AM and MC (51-70%). Cells from all compartments were proliferative, expressed the typical MSC-CD, HLA, and ESC markers, telomerase, had normal karyotypes and differentiated into adipocyte, chondrocyte and osteocyte lineages. The cells from WJ showed significantly greater CD24+ and CD108+ numbers and fluorescence intensities that discriminate between MSCs and non-stem cell mesenchymal cells, were negative for the fibroblast-specific and activating-proteins (FSP, FAP) and showed greater osteogenic and chondrogenic differentiation potential compared to AM, SA, PV and MC. Cells from the WJ offer the best clinical utility as (i) they have less non-stem cell contaminants (ii) can be generated in large numbers with minimal culture avoiding changes in phenotype, (iii) their derivation is quick and easy to standardize, (iv) they are rich in stemness characteristics and (v) have high differentiation potential. Our results show that when isolating MSCs from the UC, the WJ should be the preferred compartment, and a standardized method of derivation must be used so as to make meaningful comparisons of data between research groups.

The researchers considered the following factors in their in-depth analysis:

  • Fresh live cell counts
  • Cell counts after culture
  • Cell morphology
  • Cell proliferation
  • Cell viability
  • CD marker analysis
  • Telomerase analysis (TRAP assay)
  • Pluripotent marker analysis
  • Genomic markers
  • Cell differentiation
  • Degrees of differentiation

Click the link below to read the entire article.

Mesenchymal Stem Cells From Umbilical Cord Tissue Are Best in Clinical Applications

US FDA Green Lights Second Duchenne’s Muscular Dystrophy Patient To Receive Human Umbilical Cord Stem Cells In US

(PRWEB) MAY 26, 2016

Cell Dividing in SuspensionAfter several promising treatments in Panama using stem cell technology developed by Medistem Panama Inc. at the City of Knowledge in Panama, a 6 year-old Duchenne’s muscular dystrophy patient received his first umbilical cord tissue-derived mesenchymal stem cells in the US earlier this year following FDA approval of a second application for a single patient, investigational new drug (IND) for compassionate use.

Duchenne muscular dystrophy (DMD) is a rapidly progressive form of muscular dystrophy that occurs primarily in boys. It is caused by an alteration (mutation) in a gene, called the DMD gene, which causes the muscles to stop producing the protein dystrophin. Individuals who have DMD experience progressive loss of muscle function and weakness, which begins in the lower limbs and leads to progressively worsening disability. Death usually occurs by age 25, typically from lung disorders. There is no known cure for DMD.

This trial marks the second time the FDA has granted an investigational allogeneic stem cell IND for Duchenne’s in the United States.

Ryan Benton, the first DMD patient to be treated in the US with umbilical cord stem cells just celebrated his 30th birthday, a landmark age for any Duchenne’s patient. The FDA recently approved a request to increase Ryan’s treatments from two to three times per year. Since his treatments began in September 2014, Ryan’s condition has stabilized and there have not been any adverse side effects reported.

The new subject had traveled to the Stem Cell Institute in Panama several times for treatments similar to Ryan’s. Encouraging results and news of Ryan’s compassionate use trial prompted his parents to seek out a similar trial for him in the US, which was recently granted by the FDA.

Since 2007, The Stem Cell Institute has treated patients with human umbilical cord tissue-derived mesenchymal stem cells for autism, cerebral palsy, heart failure, multiple sclerosis, osteoarthritis, rheumatoid arthritis and spinal cord injury.

In Panama, the institute is currently providing clinical services for Translational Biosciences’ Institutional Review Board-approved phase 1/2 clinical trials for autism, MS, osteoarthritis, rheumatoid arthritis and spinal cord injury. It anticipates approvals for cerebral palsy and heart failure trials in the future. For more information about see: Translational Biosciences on ClinicalTrials.gov.

Renowned stem cell scientist Neil H. Riordan, PhD, developed the stem cell technology being utilized in this trial. Dr. Riordan is the founder and president of the Stem Cell Institute in Panama City, Panama, and Medistem Panama. Medistem Panama is providing cell harvesting and banking services for this trial.

The Aidan Foundation, a non-profit organization founded by Dr. Riordan in 2004 to provide financial assistance for researching unmet medical needs, is providing financial assistance for this trial.

About Stem Cell Institute Panama

Founded in 2007 on the principles of providing unbiased, scientifically sound treatment options; the Stem Cell Institute (SCI) has matured into the world’s leading adult stem cell therapy and research center. In close collaboration with universities and physicians world-wide, our comprehensive stem cell treatment protocols employ well-targeted combinations of autologous bone marrow stem cells and donor human umbilical cord stem cells to treat: autism, cerebral palsy, multiple sclerosis, spinal cord injury, osteoarthritis, rheumatoid arthritis, heart disease, and autoimmune diseases.

In partnership with Translational Biosciences, a subsidiary of Medistem Panama, SCI provides clinical services for ongoing clinical trials that are assessing safety and signs of efficacy for autism, multiple sclerosis, osteoarthritis, rheumatoid arthritis, and spinal cord injury using allogeneic umbilical cord tissue-derived mesenchymal stem cells (hUC-MSC) and hU-MSC-derived mesenchymal trophic factors (MTF). In the future, Translation Biosciences expects to expand its clinical trial portfolio to include heart disease and cerebral palsy.

For more information on stem cell therapy:

Stem Cell Institute Website: http://www.cellmedicine.com

Stem Cell Institute
Via Israel & Calle 66
Plaza Pacific Office #2A
Panama City, Panama

About Medistem Panama Inc.

Since opening its doors in 2007, Medistem Panama Inc. has developed adult stem cell-based products from human umbilical cord tissue and blood, adipose (fat) tissue and bone marrow. Medistem operates an 8000 sq. ft. ISO 9001-certified laboratory in the prestigious City of Knowledge. The laboratory is fully licensed by the Panamanian Ministry of Health and features 3 class 10000 clean rooms, class 100 laminar flow hoods, and class 100 incubators.

Medistem Panama Website: http://www.medistempanama.com

Medistem Panama Inc.
Ciudad del Saber, Edif. 221 / Clayton
Panama, Rep. of Panama
Phone: +507 306-2601
Fax: +507 306-2601

About Translational Biosciences

A subsidiary of Medistem Panama Inc., Translational Biosciences was founded solely to conduct clinical trials using adult stem cells and adult stem cell-derived products.

Translational Biosciences Web Site: http://www.translationalbiosciences.com

First Duchenne’s Muscular Dystrophy Patient To Receive Umbilical Cord Stem Cell Therapy In US Turns 30

The first patient with Duchenne Muscular Dystrophy to be granted FDA approval for allogeneic adult stem cell therapy in the United States turned 30 this year, well surpassing his original life expectancy and paving the way for future patients, according to non-profit organization Coming Together For A Cure.

Duchenne Muscular Dystrophy Patient and Stem Cell Recipient, Ryan Benton

Ryan Benton

WICHITA, KANSAS (PRWEB) MAY 18, 2016 – Ryan Benton was diagnosed with Duchenne Muscular Dystrophy (DMD) at the age of three and given a life expectancy in the late teens to early twenties. DMD is a relatively common progressive genetic disorder, which causes aggressive deterioration of the muscles.

In 2009, at the age of 22, Benton’s condition was critical. He met with the founder of the Stem Cell Institute in Panama City, Panama and Medistem Panama, Neil H. Riordan, PhD. Research had shown that adult stem cell therapy might have the potential to reverse the progression of DMD.

Because of the laws restricting adult stem cell therapy in the United States, Benton was forced to travel to Panama to receive his first life-saving treatment. Ryan made seven trips to Panama to receive treatments from Dr. Riordan’s team of physicians at the Stem Cell Institute.

“Ryan has seen vast improvements in muscle mass and lung capacity as a result of his treatments…”

Ryan was assured at the start that there was no guarantee that we would find success but we knew it was his only hope in fighting the disease, especially since his health was at a critical point. Ryan could tell shortly after the first treatment that something was working. He found a renewed strength that he had never felt before and not once did he see any adverse side effects. He trusted Dr. Riordan and felt safe and eager to undergo additional treatments.

It took five years of hard work and successful treatments, but Benton became the first (and only) DMD patient granted FDA approval for this form of medical therapy inside the United States. An investigational new drug (IND) for compassionate use application was approved, allowing Benton to receive treatment in his hometown, Wichita, KS.

Approval from the FDA came with many stipulations, however. This form of treatment was to be used for only a single patient, twice a year for 3 years.

By all accounts, January 2016 was a major milestone. The FDA has recently granted an additional treatment per year, now allowing Ryan three total treatments per year, as well as approval for a second compassionate use IND for another patient. This second patient, a six-year-old boy, has also shown success from previous treatments in Panama. He received his first treatment in the United States this year .

Ryan and his family have been actively involved in the local muscular dystrophy community, and have personally known dozens of others with DMD who have passed away at far too young of an age. That number continues to grow each day, which only continues to frustrate Ryan and his family as they fight for this treatment to be more readily available for others suffering from the same disease. Ryan believes that if treated early enough, patients could have a strong chance to live a “normal” life. Ryan believes if he had been treated when he was six years old, it could be very likely that he would never have faced any of the diseases debilitating effects.

Ryan has seen vast improvements in muscle mass and lung capacity as a result of his treatments, but we believe additional treatments on a more frequent basis would help ensure maximum potential when it comes to reversing the progression of his disease. Immediately following each round of treatment, we see dramatic increases in his overall health, stamina, physical strength, and ease in ability to breathe. Unfortunately, we have found that on average, three to four months after each treatment, the effectiveness of the cells begins to decrease. We believe the FDA’s permission to increase the number of treatments per year will help safeguard Ryan’s ability to preserve his improvements and more effectively control his Duchenne’s Muscular Dystrophy. Video: Ryan Benton discusses stem cell therapy for DMD
For many families that have lived alongside, or suffered from this disease, this is very exciting news. Ryan and his family are continually heart stricken as they hear of another member of their md community has died far too young due to the disease. It’s their hope they can help provide other families the same opportunities that they were so fortunate to receive.

Coming Together for a Cure, (CTFAC) is a non-profit organization founded by Benton’s siblings, Lauren and Blake after Ryan’s first round of treatments in 2009. In the 7 years since the Bentons were given new hope, they’ve been hard at work raising awareness and support for adult stem cell research and therapy.

To find more information about their organization, their family, or to find out how you can help, please visit http://www.comingtogetherforacure.org

For all other inquiries, please email comingtogetherforacure(at)gmail(dot)com

Multiple Sclerosis patient, Sam Harrell has no more use for his walker after stem cell therapy!

Here is an update from Sam Harrell who was speaking at our public seminar in Southlake, Texas in October, 2015. Sam has been to the Stem Cell Institute in Panama several times for umbilical cord mesenchymal stem cell therapy.

The beginning is about as inspirational at it gets! Go Sam!

“I used to need this [walker] get out of the house. Now, it needs me!” – Sam Harrell