Patient Stories

All of the work of SFLF is ultimately for the patients—past, present and future— who have been and will be treated successfully with adult stem cells. We recognize and appreciate the contributions made to the field by these patients. These unlikely heroes didn’t set out to change the world, but are changing the world of science and medicine everyday with their remarkable stories of courage and triumph in the face of adversity.

We have had the opportunity to recognize some of these heroes at our Vatican Conferences and to feature some of their stories in our Life Lines newsletter. We have shared their stories below, and urge you to read more about their inspiring journeys.

Heather spoke at the 2011 Vatican Conference.

Heather Abrams was diagnosed with Hodgkin’s lymphoma in 1999 when she was 15. She was treated with standard COPP/ABVD protocol and radiation and attained remission quickly. However, in July 2000, she relapsed. She was referred to Dr. Mitchell S. Cairo at Columbia University Medical Center and was treated at the Morgan Stanley Children’s Hospital of New York.Dr. Cairo treated Heather with three rounds of ICE chemotherapy protocol, radiation, and an autologous stem cell transplant that was the same protocol offered at other institutions. However, the reason Dr. Cairo was chosen to treat Heather was that he also proposed the use of Rituximab infusions and most importantly that Heather receive an allogenic umbilical cord blood transplant. Because Heather was a full-size adult at age 17, securing an appropriate sample was difficult. After much searching of the existing cord blood bank databases, a sample was found in Milan, Italy, and the transplant occurred in June 2001.Heather is a graduate of the University of Vermont with dual degrees in Animal Science and Geography, and in 2011, worked as a nature educator at the South Fork Natural History Museum in Bridgehampton, New York, led spinning classes at the local gym (despite having been treated with bleomycin), and had recently applied for admission to veterinary school.

Roxane spoke at the 2013 Vatican Conference and currently serves as a Student Ambassador for the Cellular Age

Roxane Beygi was 14 years old in 2007 when she was diagnosed with multiple sclerosis (MS). Prior to being afflicted and diagnosed with MS, Roxane was a straight ‘A’ student, an avid swimmer and tennis player. During her battle with MS, she was put on conventional treatments for MS designed to slow the progression of the ailment. Despite the best attempt and care of the treating physicians, her fanatical adherence to medical orders, and maintaining injection and medication schedules, Roxane’s condition deteriorated.

In 2009 Roxane was evaluated for autologous stem cell transplant and her treating physician referred her for the procedure. In September 2010, she underwent a stem cell transplant at the Northwestern Medical Center in Chicago. Three months after the procedure, she started college, where she was also able to restart regular exercise. Roxane is a Student Ambassador and we thank her for her service dedicated to spreading the word about the benefits of adult stem cell therapies.

Michael was previously featured in our Life Lines newsletter

In 2004, Michael Carlat suffered a major heart attack. With a young family, Michael did not want to die. His doctors had tried multiple stents and an angioplasty without much success. Michael was placed on a heart donor list which had 5,000 people ahead of him. Being a diabetic further decreased his chances of finding a match. Instead of waiting for a heart donor that might never come, Michael underwent a transplant utilizing his own adult stem cells. Today, the part of Michael’s heart that was dead is now alive and healthy. Recently, when asked what he thought about adult stem cells, he stated, “I am living proof. Without my own stem cells, I wouldn’t be here right now. They saved my life.”

Jim spoke at the 2013 Vatican Conference, and contributed an article to the October 2013 Life Lines newsletter.

James (Jim) Danhakl had no way of knowing what his future would hold when he stepped out of bed one morning in the summer of 2009 and noticed an odd tingling sensation in his toes. Jim was eventually diagnosed with a rare and malignant form of chronic inflammatory demyelinating polyneuropathy (CIDP), an autoimmune disease that attacks the peripheral nervous system. There is no cure and only limited treatment for CIDP. Over the next five months, Jim’s condition dramatically worsened.
Jim stumbled upon an online support group discussing a stem cell transplant clinical trial being conducted at Northwestern University and because of the urgency of his condition, was fast tracked into the clinical trial. The stem cell transplant was designed to ‘reboot’ his immune system. First, his adult stem cells were harvested, and then his defective immune system was destroyed with chemotherapy. His adult stem cells were then reintroduced to regrow a new immune system, genetically identical to the original, but without the bad habits it learned in its ‘previous’ life. Within weeks, Jim was taking his first steps again. A few years later, Jim has regained nearly all of his normal activities and is once again leading a full and complete life.

Francesco spoke at the 2013 Vatican Conference

In 2001, Francesco Ferrari, a 47-year-old Italian native was diagnosed with primary progressive multiple sclerosis (PPMS) and was told that there was no treatment for him. From 2001 to 2008, his condition progressively worsened. He was first seen in May 2008 at the International Multiple Sclerosis Management Practice in New York City. He complained of left lower limb weakness and dragging, an inability to walk lengthy distances, and bladder dysfunction. He was started on adult stem cell therapy in 2010, and by August 2011 he had normal bladder control. He also noted improvement in his left leg weakness and he could walk without a discernible limp. On examination, he had improved strength in his left leg and could jump easily as well as hop on either leg. However, he stopped therapy at the end 2011. He was re-examined in November 2012 and felt he had regressed and wanted to re-start therapy. When Francesco joined us in Rome, he had hopes that with the stem cell therapy, he would no longer face a future in a wheelchair and that he would regain almost normal function.

Elizabeth was honored at the 2013 Vatican Conference and featured in our March 2013 Life Lines newsletter

Born with osteogenesis imperfecta (OI), Elizabeth Lobato was given a dire prognosis. Children with OI, also known as “Brittle Bones” disease, usually grow no taller than three and a half feet and have severe bone deformities. Most spend their lives in wheelchairs and even the slightest jolt or bump can cause their bones to fracture, causing incredible pain.
Elizabeth was born with many broken bones and her family fought for her survival. They learned about an innovative stem cell transplant procedure that would use her father’s adult stem cells to encourage her growth. While Elizabeth was undergoing this stem cell treatment, she grew six inches and was able to leave her wheelchair to walk, and even dance. When Elizabeth joined us in Rome, she was continuing her stem cell treatments with the hope to be able to walk on a regular basis. Her doctors were hopeful that with more stem cell treatments that Elizabeth could continue to lead a normal life.

Ciaran was honored at the 2013 Vatican Conference

Ciaran Finn-Lynch made medical history in March 2010 as the first child in the world to undergo a pioneering stem cell-supported tracheal transplant. Ciaran was born under dire circumstances. He was diagnosed with long segment tracheal stenosis, a condition which leaves sufferers with a very narrow windpipe and difficulties breathing. The transplant, performed at Great Ormond Street Hospital in the United Kingdom, used adult stem cells to rebuild the airway in his body. Once the trachea was transplanted, researchers continued to infuse growth proteins into the organ to continue stem cell generation. Because this was an emergency procedure, this technique allowed for researchers to transplant the organ faster instead of having to wait for the organ to grow outside of the body.When we saw Ciaran in Rome, he was doing well post-transplant. Doctors said he has grown 11 centimetres in height and has returned to school. The doctors on his transplant team believe that the success of Ciaran’s procedure points to a future in which these cells can be used to grow more complex organs which are made up of different types of tissues.

Charles spoke at the 2011 Vatican Conference

In 2000, Charles Melber experienced a heart attack that resulted in repeated hospital stays. By 2004, he had more than 30 stents placed in his heart. When he was accepted into an adult stem cell clinical trial in 2006, run by Dr. Richard Schatz, his health had deteriorated further. He was using nitroglycerin in excessive doses, and his physical ability to perform daily tasks was severely compromised.In September 2006, he had adult stem cells injected into his heart muscle at the Scripps Green Hospital in San Diego, California. He underwent stem cell mobilization, a process that includes injections of a stem cell mobilizing agent over the course of several days, followed by apheresis, where the mobilized stem cells are collected by filtering them from his whole blood into a centrifuge.After the collection process, he spent the night in the hospital and, early the next day, Dr. Schatz injected the collected cells into his heart muscle through a catheter in a process very similar to an angiogram. He spent the balance of that day and one night in the hospital before being released. He started noticing improvement within three weeks.Dr. Schatz continued to monitor Charles’ progress, running tests at various intervals. Charles continued to improve with longer treadmill times and positive responses to other tests. Within a few months, he showed remarkable improvement.

Don spoke at the 2013 Vatican Conference and was featured in the Spring 2012 Life Lines newsletter

In 2007, Don Robinson of Georgia, then 58 years old, suffered a severe heart attack. He felt stabbing pains between his shoulder blades and a scan verified substantial heart muscle damage. His doctors explained to him that such weakness of the heart can lead to congestive heart failure and possibly death. With that grim knowledge, Don enlisted in a Phase I clinical trial of a product candidate called AMR-001. The trial was sponsored by NeoStem and uses a patient’s own adult stem cells to try to prevent further heart damage.Clinicians extracted bone marrow from Don’s hip, isolated the cells intended to enhance blood vessel formation, and administered the cells back into his damaged artery via a catheter, thereby preserving at-risk muscle tissue and protecting it from further damage. The overall outcome was that there appeared to be improved blood supply to the area affected by the heart attack. Six months later, a scan showed additional active muscle. Six years after the treatment, Don described that he has more energy and that feels back to normal.

Stephen spoke at the 2011 Vatican Conference

In the fall of 1995, Stephen Sprague was diagnosed with chronic myelogenous leukemia. Unfortunatley, after 18 months of chemotherapy and in desperate need of a bone marrow transplant, he found himself in “blast crisis”—the end stage of his disease. An only child with no siblings as possible donors and unable to find an unrelated marrow match in any of the donor registries, he was realistically told to “get his affairs in order.”In October 1997, Stephen was presented with an unexpected, but high-risk, opportunity to become one of the first adult patients to participate in a pioneering clinical trial being conducted at Hackensack University Medical Center, New Jersey, using umbilical cord blood as an alternative to bone marrow as a stem cell source.As of 2011, following his successful transplant more than 13 years before, Stephen as completely cured of his leukemia and in relatively good health. He was proud to have lived to see both of his children marry and prosper and was a most-proud grandfather to five grandchildren.Stephen demonstrates the importance of the clinical trial process and that cord blood stem cells can be used effectively on full-sized adult patients if the human leukocyte antigen match is optimal. His case has been published by Dr. Andrew L. Pecora and his colleagues in the April 2000 issue of Bone Marrow Transplantation. Stephen is often requested to appear and testify before the FDA, various U.S. House and Senate Committees and the White House, each investigating promising, non-embryonic adult stem cell applications. In October 2007, he was appointed by the U.S. Secretary of Health and Human Services to serve on the Health Resources and Services Administration’s Advisory Council on Blood Stem Cell Transplantation.In 2011, Stephen served as director of patient advocacy for CORD:USE, a family cord blood bank in Orlando, Florida.