Cord Blood Used to Treat Child with Hurler Syndrome, Genetic Disorder

Cord Blood Used to Treat Child with Hurler Syndrome, Genetic Disorder

Meet Lyla Edgington. Lyla was first diagnosed with Hurler Syndrome (MPS Type I) on April 4th, 2016 when she was just 7 months old.  Her doctors said she needed a stem cell transplant and that cord blood would give her the best chances at overcoming this life-threatening genetic disorder.

Lyla’s doctors and parents began to worry when their pediatrician, Dr. Katherine Lichtsinn at Scottsdale Children’s Group noticed a heart murmur during her 4 month check-up. Returning for another check-up at 6 months, Helen, Lyla’s mother, pointed out a sharp curve in Lyla’s spine that she had noticed. It was then that her doctor suspected a possible genetic disorder and referred them to a specialist at Phoenix Children’s Hospital.

In Phoenix, Lyla underwent numerous blood tests hoping to rule out MPS. Unfortunately, this would not be the case. Not only were their fears confirmed but the medical team concluded that Lyla had the most severe form of the disease, MPS Type 1, better known as Hurler Syndrome or Hurler’s disease.

Our world came crashing down that day, but luckily the weeks to follow were full of good news. To say life was like a storm on April 4th, 2016 on the day we received Lyla’s diagnosis, is an understatement…..the tears flowed like a monsoon, my body shook like an earthquake, and the life I envisioned for my daughter was torn to the ground. I truly thought our world had ended.Helen Edgington, Lyla's Mother

Helen was devastated, and worse, she felt responsible even though there was nothing she could have done differently.  She and her husband, Steve, had given birth to a beautiful little girl. She was perfect in every way. Hundreds of questions came pouring through the emotions as they wondered “Why us?”

MPS I (Hurler, Hurler-Scheie, Scheie syndrome)
MPS I, along with six other MPS diseases is a mucopolysaccharide disease that is relentlessly progressive and potentially fatal. MPS I has also been called Hurler, Hurler-Scheie and Scheie syndrome . Hurler takes its name from Gertrude Hurler, the doctor who described a boy and girl with the condition in 1919. In 1962, Dr. Scheie, a consultant ophthalmologist, wrote about some of his patients who were more mildly affected. Individuals who seem not to fit clearly in either the severe or the mild end of the disease were said to have Hurler/Scheie. The specific disease names have been replaced with the designations attenuated (diminished severity) and severe MPS I. There is no cure for MPS diseases, but there are ways of managing and treating the problems they cause.

(Source: National MPS Society, http://mpssociety.org/mps/mps-i/ )

Child with Hurlers Syndrome treated with Cord Blood

Lyla, diagnosed at 7 months with MPS Type 1 (Hurler Syndrome)

Helen still remembers those initial hours, “As a parent your duty is to protect your child and I had failed within the first moments she was created. I passed on a defective gene that would cripple her body, deteriorate her brain, and end her precious life after it had barely begun. I held my beautiful 7 month old daughter so tight. I sobbed because I couldn’t bear to watch her smile fade away and her energy disappear day by day over the next couple years. It wasn’t possible. Lyla was too perfect, she had too much personality, she was too smart, and she could already throw a tennis ball so well. But at that moment… Lyla was still Lyla and I couldn’t help but smile when she did and enjoy every moment with her. Everything had changed but nothing had changed.”

Right away, Dr. Kristin Lindstrom at the Phoenix Children’s Hospital recommended a stem cell transplant. Initially, they thought this meant a bone marrow transplant and Dr. Lindstrom referred them to Dr. Paul Orchard at the University of Minnesota. Dr. Orchard explained that transplants for MPS patients have greatly improved over the last several years. He explained that cord blood could be the best choice for Lyla and give her the best chances for a successful transplant.

The goal was not simple. In order to be successful, the transplant needed to rid Lyla’s body of her own cells (because they were genetically faulty) and replace her cells with healthy new ones. Although the actual transplant lasts only a few minutes, the whole healing process would be quite long and span several months.

Helen and Steve were encouraged by this possible treatment and agreed that this was their best option for young Lyla. The wheels were put in motion. They would go to Minnesota for treatment. Lyla’s parents received approval from insurance and doctors began to search for a donor. It was a race against the clock as the disease was constantly working against them, deteriorating brain cells. Luckily, a match was found and it was a perfect 6 out of 6 match! The transplant date was set for July 25th, 2016.

The procedure lasted 25 minutes and was much like a typical blood transfusion. In accordance with donor rules, Lyla’s parents were not told where the donor was born or the identity of the generous family. They only know that the donated cord blood came from a little girl born in May 2013. She could be from anywhere in the world.

Looking back the reality of the situation, it should have been much scarier than it was. But, we were just so happy and thankful Lyla had the option of a stem cell transplant and that she had a perfect 6 out of 6 cord blood match. We knew there was a long road ahead, but we were very optimistic!Helen Edgington, Lyla's Mother
Hurlers Syndrome Treated with Cord Blood

A cord blood donation gave a new life to Lyla.

Hurler Syndrome is a progressive genetic disease. If you don’t treat it, it will gradually cause severe physical and mental damage. Lyla’s parents knew this and this is why timing was so crucial in her case. Luckily, Lyla was diagnosed early and did not have too much damage prior to the transplant. This meant her chances were good. However, because of the nature of the disorder, Lyla’s parents and doctors were not expecting to see major improvements necessarily in her mental and physical functions but what they hoped was that the progression of the disorder would stop. The goal was to stop the disorder from becoming worse. Questions remained as to if some damage would continue to occur following transplant or would the transplant be effective immediately?

The first few weeks after the transplant were really difficult because of the impact of the chemotherapy. Lyla suffered from low energy and clearly her spirits were down. However, after the first month, doctors confirmed that the transplant had fully engrafted (the donor cells had been accepted by her body). Success!  From there it is was smooth sailing. . . she returned to being a happy girl most of the time while living under constant medical supervision (remember, she was not even a year old at the time).

When discussing stem cell transplants, doctors often refer to the “first 100 days.” Although not always applicable to every case, this milestone often indicates whether a transplant has been “successful” or not. In Lyla’s case, she was doing great and around day +95 her parents started preparing for their flight home. Then, the phone rang. Lyla’s blood tests came back with issues.

Lyla’s parents explained, “The transplant worked but for some unknown reason the new white cells were creating antibodies against the new platelets and red blood cells. Lyla’s immune system needed to be wiped out again to kill the antibodies and we had to hope the new ones wouldn’t do the same thing. This was a huge bump in the road for us and really tore down our spirits. It took another very long 5 months of Lyla on high dose steriods, tons of infusions, very little sleep, and at a huge risk for infection but luckily it worked and the bad antibodies didn’t return! Overall, it took a full 9 months after transplant to know that it was an overwhelming success.”

Post transplant Lyla is developing normally.

Post-transplant, Lyla has been blossoming!

Success. What a magic word! Success. This word meant hope to the Edgingtons. Success, meant their daughter might beat the odds. Success meant life and quality of life!

Today, the Edgingtons are just starting to turn the corner on this battle but they have been very encouraged by the results. The transplant worked and despite some complications around day 95, it appears that the transplant stopped damage caused by the disorder almost immediately. Based on various tests, Lyla did not experience any further damage post-transplant.

“She is developmentally on track,
so we feel confident the transplant
stopped damage to her brain,”
says Lyla’s mother.

Her parents realize how lucky they are. The stars aligned for Lyla. She had excellent doctors. She had a 6 out 6 stem cell match, thanks to cord blood. She had pro-active parents and grandparents who did everything they could to help her. In the end, it literally took everyone but they have been fortunate in many ways.

Looking to the future, we asked Helen what advice she has for parents, health professionals and even students interested in pursuing STEM careers with an interest in cord blood.

For Parents:

My advice for parents is to never ignore anything that seems odd about your baby. It took me a month or so to mention the curve in Lyla’s spine because I thought it could have been a normal baby thing or something she would grow out of. 

For Health Professionals:

My advice for health professionals, is to continue to do the amazing work you’re doing and saving so many lives! I have so much appreciation for the medical field and doctors who devote their life to finding cures to all the horrible diseases out there. It’s truly incredible!!

For STEM Students:

For students, I encourage you to use your social media skills and networks to help raise awareness for cord blood donation and it’s amazing benefits!

In honor of Lyla’s donor and to help build awareness for MPS / Hurler Syndrome as well as the need for cord blood donors, Helen and Steve have created a beautiful video detailing Lyla’s story. Watch it here:

Make a difference in your community.
Join us for World Cord Blood Day on November 15th, 2017!
Learn more, click here.

 

 

Interview with Diane Paradise: How Cord Blood Stopped Her Hodgkins Lymphoma

Interview with Diane Paradise: How Cord Blood Stopped Her Hodgkins Lymphoma

Save the Cord Foundation recently sat down to speak with Diane Paradise who beat cancer thanks to a cord blood transplant. In this interview, Diane tells us about her long battle with Hodgkins Lymphoma and how close she came to dying. To see her now, you would never know that she had ever been sick.

Diane has a wonderfully infectious personality. When you meet her, you immediately smile. She is positive in every way but it is not until you hear Diane tell her story that you realize how special (and lucky) she is.

WATCH THE VIDEO HERE.

 

She was 24 when initially diagnosed with Nodular lymphocyte predominant Hodgkin disease. Her life changed in an instant. A small lump under her arm turned into non-stop chemo and hospital visits, cycles of improvement only to be diagnosed again with cancer, treatments which became less and less effective. . .

Throughout the years, Diane explored new treatments, new doctors and challenged the predictions regarding her chances to conquer this horrible disease. She never gave up. She new her best chance was herself.

It was her determination that led her to the specialists at Johns Hopkins. She was invited to participate in a clinical trial and then randomly selected to receive a cord blood transplant. After much research of her own, Diane decided to go forward with her participation in the study. It was a decision that would ultimately save her life.

She received a double cord blood stem cell transplant on December 3rd, 2013. The cords come from donors who she will never meet. She knows one of the cords came from a little girl born on July 21, 2011. Just think. . . she is about to turn 6 and has already saved someone’s life!

In this short interview with Diane, we talk to her about life before and after her cord blood transplant. She reminds of how she is still trying to get used to being “cancer-free” because for years cancer was all she knew. She became one with it. Today, she is proud to say that she has been officially “released from Oncology” and no longer lives in fear.

Read more about Diane here. 

Diane has one message to those who are expecting a baby. . . “Save the Cord!”

 

We wish to thank Diane Paradise

for taking the time to share her story with us at

Save the Cord Foundation. 

 

#WeCanICan: #BeatCancer with Cord Blood

#WeCanICan: #BeatCancer with Cord Blood

Learn more about our on-going series “# WeCanICan : Beat Cancer with Cord Blood” and register to be a part of our Parents community. We are committed to cord blood education for parents and the medical community worldwide. Show your support by sharing this information with others, especially expectant parents.

Update on Autism Clinical Trials: Interview with Dr. Michael Chez

Update on Autism Clinical Trials: Interview with Dr. Michael Chez

Save the Cord Foundation recently interviewed Dr. Michael Chez (Sutter Health / Sutter Neurological Institute) about the encouraging results coming out of his autism clinical trials using cord blood. In addition, Dr. Chez spoke about the exciting work in this area also being done at Duke University by Dr. Joanne Kurtzberg and Geraldine Dawson, PhD.

Autism is a complicated developmental disability that affects as many as 1 in 68 children in the United States alone, according to the Centers for Disease Control and Prevention (source: CDC.gov). Imagine how many lives could be changed, if we could find a cure or treatment for autism. Many researchers feel that using a child’s own autologous cord blood could be the key to unlocking this mystery via the emerging field of regenerative medicine.

In this interview, Dr. Chez details the background and results of his clinical trials studying cord blood’s effect on autism. This particular study is significant because it included a placebo which is not always the case in cord blood research. Specifically, this was a double-blind placebo crossover study meaning that ultimately all participants received their cord blood.

Tip for Parents
It is interesting to note that in this particular study and many like it, participants received their own cord blood via private banking. Several private cord blood banks around the world lead (or participate in) on-going research using cord blood. In some cases, parents who store their cord blood privately may be asked by their bank if they would like to participate in a clinical trial (covering a variety of topics). For some parents having this option is important because they anticipate health issues for their baby based on family history or an issue identified during pregnancy. However, not all cord blood banks participate in this type of research. If this is important to you, do your research on the bank you are considering and make sure that they follow the highest standards in terms of storage criteria and processing.

Watch the video now and learn about the latest research using cord blood to potentially treat autism:

Autism and Cord Blood Clinical Trials

Save the Cord Foundation wishes to thank Dr. Michael Chez
for sharing his valuable insight on autism clinical trials using cord blood. 

 

Test your knowledge on cord blood!

 

A Father’s Story: Cord Blood Saved His Son’s Life

A Father’s Story: Cord Blood Saved His Son’s Life

Erik Praskins spoke about his son’s battle with leukemia at the Arizona Cord Blood Conference 2017 held in Phoenix, Arizona. His story is not unique yet, it is hard for many of us to imagine. Watch Erik tell his story below. . .

Children are sometimes described as “angels among us.” Indeed, every parent has felt that emotional moment of amazement looking into their child’s eyes or watching them discover something new in the world. Everytime they walk in the room, our perspective on the world changes. In their innocence, we are reminded of all that is good in the world. Perhaps, this is why we are always so shocked and saddened to hear about children fighting cancer? It seems so unjust (and it is).

According to the American Cancer Society (source: www.cancer.org), leukemia is the most common cancer in children and teens. Within the leukemia category, the most common are acute lymphocytic leukemia (ALL) and acute myeloid leukemia (AML). Although 5-year survival rates have increased, each year more than 2,000 children under age 19 die from cancer in the United States alone (source: www.childrenscancer.org).

In a recent talk at the Arizona Cord Blood Conference, Erik Praskins spoke openly about how his son’s life was saved thanks to a generous cord blood donation from a family he will probably never meet. His son, Dylan, was only 2 months old when he was diagnosed with leukemia, specifically ALL. His case was very serious. He was considered high-risk and required a stem cell transplant immediately. When a bone marrow donor could not be found, doctors turned to cord blood. Cord blood is more easily matched than bone marrow. It is also readily available if stored at birth. Recent studies have also suggested that a cord blood transplant for high-risk patients results in fewer cases of relapse (source: www.fredhutch.org).

Dylan was lucky in so many ways. His parents and doctors were quick to identify the cancer. They worked tirelessly to find an appropriate treatment for him. Little did they know on day one of this battle, that it would be the birth of another child somewhere in the world who would give Dylan a second chance. That child’s family literally gave life twice by donating their child’s cord blood instead of simply throwing it away. For this, Dylan’s family is eternally grateful. Just watch Erik’s face at the end of this video and you will see the gratitude spill over.

Perhaps their are angels among us?

Learn more about Dylan’s story here.

 

Save the Cord Foundation is proud to work with and support public cord blood donation programs around the world. We are especially proud of our work with the Arizona Public Cord Blood Program in our home state.
Find out how you can donate to this amazing public program
that helps patients, like Dylan, in Arizona and across the globe.

 

Cord Blood Experts Discuss Educational Approaches for Parents, Health Professionals & Students

Cord Blood Experts Discuss Educational Approaches for Parents, Health Professionals & Students

cord blood world europe 2017 educational approaches roundtableSave the Cord Foundation recently had the honor of attending Cord Blood World Europe 2017, part of the World Advanced Therapies & Regenerative Medicine Congress and World Precision Medicine Congress, held in London. This was a fantastic opportunity to hear excellent speakers such as Dr. Joanne Kurtzberg, Dr. Colleen Delaney, Dr. Paul Veys, Dr. Guy Sauvageau and many others speak about cord blood research and current uses for cord blood in the medical world. In addition, topics went beyond cord blood at times as experts discussed processing and uses for cord tissue as well as other perinatal stem cells. Regenerative medicine was a recurring theme throughout.

A great emphasis was placed on interacting with the expert presenters via lively roundtables and open panel discussions. Save the Cord Foundation was invited to host a roundtable discussion called “Educational Approaches.” We worked with attendees on new educational approaches addressing a variety of audiences, namely health professionals, expectant parents and our next generation of STEM professionals. Several of the participants in this roundtable discussion agreed to share their thoughts with the Save the Cord Foundation community. Below is a quick summary based on some of the most talked about presentations:

One of the most exciting presentations was made by Dr. Colleen Delaney of Nohla Therapeutics and Fred Hutchinson Cancer Research Center. Dr. Delaney presented “Ex-vivo Expanded Hematopoietic Stem/Progenitor Cell Therapies: The Road from a Patient Specific to Universal Donor Approach.” Participants in our roundtable commented that there were several key points made in this presentation that health professionals and parents needed to know about, for example:

After hearing Dr. Delaney’s presentation, I feel parents and health professionals need to realize why cord blood expansion techniques and the concept of the ‘universal donor’ which Dr. Delaney is exploring are so necessary. In particular, compared to patients of Caucasian descent, if a patient of mixed ethnicity is trying to find a match today the odds go down drastically. It is important for parents to know why this cord blood expansion technology led by Dr. Delaney is important and that happily it is perhaps just a few years away from being market ready. That potential is very encouraging.Mara Lucato (Create Cord Blood Bank Canada - www.createcordbank.com)

Another interesting presentation was made by Chiranya (Anjie) Prachaseri of Cryoviva in South East Asia, called “Perinatal Stem Cell Banking- Uses and Future Opportunities – A South East Asian Perspective.” This presentation emphasized the on-going problem with press and media coverage of cord blood which can often mislead parents and doctors. Prachaseri also discussed the fact that many parents do not know about the various accreditation groups who play a very important role in the industry.

Although the presentation focused mainly on South East Asia, Dr. Mareike Uhlmann from Stemlab, who participated in our roundtable, agreed it is crucial. . .

to ensure that the bank you want to use for storage is properly accredited and certified to guarantee that the parent’s hopes won’t be shattered in case a treatment is needed.Dr. Mareike Uhlmann (Stemlab - www.stemlab.ch)

Andre Gomes, also from Stemlab, stated how important it is to address the misinformation that is being given to our youth – the next generation of scientists, doctors, policy makers, etc. He applauded Prachaseri’s efforts of speaking to university students about cord blood and stem cell applications.

This has to be explained. More information must be given to young people otherwise we will always be fighting misinformation and confusing press. We need to move from the idea that ‘stem cells are bad’ to a discussion about the good and bad reasons for stem cell storage.Andre Gomes (Stemlab - www.stemlab.ch)

Finally, another presentation that prompted interesting discussion was made by Joana Correia of Exogenus Therapeutics. Correia presented “Umbilical Cord Blood Supply for the Development of Exo-Wound, an Exosome-based Product for Chronic Wounds.” Based on this presentation, roundtable participants saw opportunity for future STEM professionals who want to explore cellular expansion, delivery mechanisms, exosome extraction or even the shifts between translational and clinical applications. While these opportunities cannot be denied, several roundtable participants expressed caution reminding the group that cord blood stem cells are truly precious and should be used wisely.

Our collective responsibility, as scientists and educators, is to ensure that parents understand the true value of their newborn’s stem cells.Dr. Ayub Lulat (Create Cord Blood Bank Canada - www.createcordbank.com )
Challenges in cord blood education

Experts discuss challenges in cord blood education

We, at Save the Cord Foundation, could not agree more. Cord blood is rich in stem cells. If collected and stored properly, these stem cells could be currently used to treat more than 80 different life-threatening diseases including many blood cancers. Compared to bone marrow, it is much easier to match and carries less risk of Graft versus Host Disease. Impressive research is also underway around the globe to test cord blood’s potential in regenerative medicine. For example, there is ground-breaking research to potentially treat spinal cord injury, traumatic brain injury, hearing loss and diabetes all using cord blood.

This is why we tell every parent. . . do everything you can to save your baby’s cord blood. If you can donate it, then donate it. If you prefer to privately store it (for eventual use by your child or family member), then do it. Be proactive and plan ahead. Please don’t throw this valuable medical resource away. Save the cord.

Meet another cord blood expert: Dr. Curtis Cetrulo, Sr.

Learn about the current uses of cord blood and perinatal stem cells. . . click here.

 

 

London Puts the Spotlight on Cord Blood

London Puts the Spotlight on Cord Blood

cord blood spotlight london fact cba isct meetingsLondon is buzzing with talk about cord blood these days!  The 2017 ISCT Meetings kicked off last week with a 2-day focus on cord blood featuring experts from FACT, CBA, ISCT and ASBMT.  Our team was fortunate to be in attendance for this exclusive event.

The first day of the event focused on introducing banks to the FACT Cord Blood inspection process as well as the need for international standards. A portion of the day was also dedicated to explaining the role of the inspector and the requirements for becoming an inspector.

On the second day, meetings ran in tandem featuring a variety of topics and speakers. Attendees were encouraged to float between the two rooms and attend those meeting most important to them. In one room, FACT focused on real world applications of procedures and concepts. The day was designed to strengthen attendees quality assurance knowledge through a variety of presentations and exercises.

One of our favorite presentations and exercises looked at the implications and risks of having standards that are too strict given the potential new applications for cord blood in the near future. This topic was led by Ed Brindle, MSc, MLT from Insception Lifebank cord blood bank in Canada and an active volunteer on the FACT Accreditation Standards Committee.  He challenged attendees to work together to determine the pros and cons of changing certain acceptance criteria for cord blood units and the impact that these changes would have on current and future therapies.

Another notable presentation was made by Gesine Koegler, PhD who discussed the recent evolutions in the industry, namely the NetCord and WMDA partnership. Not only did Koegler give an overview of current trends in the industry but she spoke in great detail about the benefits of bringing WMDA and NetCord together under one umbrella. Born out of common goals, the new partnership signals another milestone for the industry as a whole.

CBA Agenda ISCT 2017

CBA Agenda ISCT 2017

Just upstairs, the Cord Blood Association together with ISCT and ABSMT held a full day of presentations. They hosted a truly dynamic group of speakers including Jaap Boelens, PhD. and Juliet Barker, MBBS. Dr. Joanne Kurtzberg and Dr. Elizabeth J. Shpall presented alongside key leaders in the field to cover topics such as cord expansion, cord blood versus haplo trends and breakthroughs in regenerative medicine. Each presentation was packed with useful information and the question/answer sessions were particularly beneficial.

Without a doubt the 2-day Cord Blood Spotlight was both highly educational and practical. As attendees, we learned about the importance of international standards for both public and private cord blood banks. We also enjoyed hearing how the latest research is advancing and then going back to the workshops to explore how the standards might change in the future based on these developments.

One thing is clear. . . the best public/private cord blood banks understand these details. They are actively making sure that the cord blood units they store are accessible and usable for current applications. They are also preparing today for what the near future holds, especially with regards to regenerative medicine.

 

Habla espanol ? Discover our selection of articles in Spanish.

medicina regerativa cordon umbilical

 

 

 

“Medicina regenerativa:
Salve vidas y reduzca costos de atención médica”

 

 

Share the Science: Dr. Tim Nelson from the MAYO Clinic, Strengthening the HLHS Heart with Cord Blood

Share the Science: Dr. Tim Nelson from the MAYO Clinic, Strengthening the HLHS Heart with Cord Blood

Cutting edge research at the MAYO Clinic is leading to new hope for individuals with HLHS Heart Syndrome and cord blood is a critical part of the story. Can cord blood strengthen the heart?  Dr. Timothy Nelson recently discussed his latest clinical trial on “Share the Science.”

Update: Dr. Nelson made his presentation live on “Share the Science” on May 17th, 2017. The recording is now available for viewing. Please click below.

Free Webinar: Save the Cord Foundation and Mediware, Inc. are proud to welcome Dr. Timothy Nelson for our next edition of Share the Science on May 17th, 2017. Share the Science is a free webinar series focused on the cord blood industry and the latest research in this field.  As always, we invite both health professionals and the general public to join us for this enlightening presentation.

Imagine the news. . . you are pregnant or perhaps just gave birth and your doctor tells you that your baby’s heart has not developed correctly. It is HLHS. Treatment typically involves a series of three intense surgeries as soon as the baby is born. If left untreated, HLHS is fatal soon after birth.

What is HLHS?

HLHS or Hypoplastic Left Heart Syndrome is a rare and complex congenital heart defect for which there is currently no cure.  Affecting more than 2,000 newborns in the United States each year, this disease is defined by underdevelopment.  According to the Mayo Clinic, “In HLHS, the left side of a child’s heart — the left ventricle, ascending aorta and left heart valves — is severely underdeveloped. The result is a heart with only a single functional ventricular chamber — the right ventricle — and a small ascending aorta.” (Source: Mayo Foundation for Medical Education and Research (MFMER))

At the MAYO Clinic, Dr. Timothy Nelson, M.D., Ph.D. leads an innovative team of physicians and scientists with one goal in mind. . . find a cure for HLHS.  As the director of Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome, and the the medical director of the Regenerative Medicine Consult Service, Dr. Nelson and his team are pursuing an innovative clinical trial using stem cells from cord blood to strengthen a baby’s heart following a HLHS diagnosis. The umbilical cord blood cells are processed in a specific manner in order to create highly concentrated stem cells that are injected into the heart at the time of the baby’s second open heart surgery.

The HLHS program has also recently created the HLHS consortium, a network of institutions that are participating in HLHS research. The consortium makes it easier for patients to participate in the overall research, including the umbilical cord blood collection, no matter their location.

Join us for this special presentation. . .

Dr. Timothy NELSON
from the Mayo Clinic’s
Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome

“Strengthening the HLHS Heart Using Umbilical Cord Blood”

Wednesday, May 17 | 2 p.m. – 3 p.m. Central Time

Free to register. Open to the public.

View the recording of SHARE THE SCIENCE with Dr. Timothy Nelson – Strengthening the HLHS Heart Using Umbilical Cord Blood

In this webinar, you will learn:

  • The importance of banking umbilical cord blood for babies with HLHS
  • What makes Mayo Clinic’s Todd and Karen Wanek Family Program for HLHS unique when it comes to umbilical cord blood banking
  • Details about the clinical trial using umbilical cord blood for babies with HLHS
  • How HLHS research at Mayo Clinic’s HLHS program is changing the future for HLHS individuals

 

Want to learn more?

Share the Science continues to be a popular series within the cord blood community and beyond. We welcome your input on the series and suggestions for future speakers. Give your feedback here.

powerhouses of science - cord blood research
Previous Share the Science presentations have been archived for your reference. Discover the work of leading scientists and cord blood industry experts through this educational series. View the archive now.

Share the Science is made possible thanks to the generous support of Mediware, Inc.

 

Cord Blood Spotlight at 2017 ISCT Annual Meeting in London

Cord Blood Spotlight at 2017 ISCT Annual Meeting in London

This May, London will welcome the world’s best in the cord blood industry and cellular therapy. Just prior to the 2017 ISCT Annual Meeting, an exclusive 2-day workshop and lecture “Cord Blood Spotlight” will be hosted by FACT, CBA, ISCT, and ASBMT welcoming world-renowned cord blood scientists and transplant physicians.

In the decades since Dr. Eliane Gluckman and her team performed the world’s first cord blood transplant in France, the number of applications for this non-controversial source of stem cells have grown dramatically. Today, cord blood is being used to treat over 80 different diseases.  Since 1988, there have been over 35,000 cord blood transplants worldwide. The industry has grown globally to include a dynamic mix of public, private and hybrid cord blood banks. In particular, research using cord blood for regenerative medicine purposes has continued to evolve in amazing ways. Today, it is not unusual for us to talk about cord blood saving someone from cancer or being used to help a young child with cerebral palsy.

Globally, many of the industry’s players work together helping patients in need crossing public / private barriers as well as international borders. The cord blood industry is unique in that it is not selling a drug but rather enabling parents to help their own families or a stranger in need by storing and processing a valuable, natural medical resource — cord blood. However, while the industry is unique it is not immune to standards. In fact, these standards are even more important given the global nature of the industry and stem cells themselves. Quality assurance is compulsory. Understanding how cord blood is going to be used in the near or distant future is vitally important when considering which processes and standards to apply during the collection and storage process.

The 2-Day “Cord Blood Spotlight” has been designed with these challenges in mind.  The purpose of this meeting is to provide insight on cord blood banking standards and foster a pro-active approach to improving the quality of cord blood banking worldwide. This 2-day event will provide cord blood banks from the globe an opportunity to speak one-on-one with cord blood scientists and transplant physicians to better understand why certain processes are preferred and how banks could potentially increase the number of transplants completed by strengthening quality assurance.

Click here to REGISTER for “Cord Blood Spotlight”

Below is an overview of the 2-day program being proposed by FACT, CBA, ISCT and ASBMT:

cord blood spotlight ISCT London

2017 ISCT Annual Meetings: Cord Blood Spotlight

Click here for more info on the 2017 ISCT Annual Meetings.

Cord Blood World Europe 2017: Educational Approaches

Cord Blood World Europe 2017: Educational Approaches

The Cord Blood World Europe conference in London is just around the corner and Save the Cord Foundation is pleased to announce that we will be participating again this year. Our team will be leading a unique roundtable/workshop called “Educational Approaches” building on themes of collaboration presented by key speakers at this event.

The Cord Blood World Europe conference has evolved over the years into a dynamic platform for collaboration and discussion amongst the cord blood industry’s leading experts. Each year the event welcomes numerous researchers and visionaries from all over the world who have one thing in common. . . cord blood.  Born out of demand from feedback over the years Cord Blood World Europe aims to bring together public and private banks, clinicians, researchers, regulatory bodies and solution providers to tackle the challenges and opportunities facing the industry. The conference focuses on the continued need to increase the number of parents who privately store or donate cord blood, reduce costs, increase utilisation, advance regenerative applications and improve quality.

Cord Blood World Europe 2017
17-18 May 2017
Business Design Center, London
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In 2017, there will be a special emphasis placed on new collaborations developing in this maturing industry. The conference will serve as a springboard for discussions both publicly and privately on how to move forward globally with research and current cellular therapies using cord blood. In addition to lectures from renowned cord blood pioneers such as Dr. Colleen Delaney of NoHLA Therapeutics/Fred Hutchinson Cancer Center and Dr. Joanne Kurtzberg of Duke University, a series of panel discussions with cord blood experts from both the public and private arenas will allow participants to dig deeper into various topics and seek real world answers to challenges they face as a cord blood bank, a researcher, an oncologist, a charity, etc.

Just to name a few of the presentations/discussions we are looking forward to. . .

  • Keynote presentations from Dr. Colleen Delaney from NoHLA/Fred Hutchinson Cancer Center and Professor Vanderson Rocha of Eurocord
  • Research focused presentations from Dr. Joanne Kurtzberg of Duke University and Dr. Jaap Boelens of UMC Utrecht
  • Panel discussion on “The Advantages of Banking Other Tissue, and the Effect This Will Have on the Cord Blood Industry”
  • Panel discussion on “Cord Blood Expansion: How Close Are We to a Solution for this Bottleneck?”
  • Break out session on “Patient Advocacy” highlighting differences in US and UK mandates
Exclusive Roundtable/Workshop: EDUCATIONAL APPROACHES
Building on themes of collaboration, Save the Cord Foundation will lead a special roundtable/workshop called “Educational Approaches.” This roundtable/workshop will focus on the art of communication and education within the industry. Our team will work with participants in small group sessions to develop educational messages for various audiences. All participants will be given the option to feature their educational messages on our website at Save the Cord Foundation along with a backlink to their website where their teams will be encouraged to build on this message. The goal is to start a series of conversations across the globe, targeting a variety of audiences and building on what is presented at Cord Blood World Europe 2017. PLACES ARE LIMITED.

Please note, places are very limited for the “Educational Approaches” roundtable/workshop with Save the Cord Foundation. Please reserve your spot for the conference and the roundtable via the Terrapin website: http://www.terrapinn.com/conference/cord-blood-world-europe/index.stm

Image courtesy of KROMKRATHOG at FreeDigitalPhotos.net

Intel ISEF 2017: STEM Students from 75 Countries to Learn about Cord Blood from STCF & StemCyte

Intel ISEF 2017: STEM Students from 75 Countries to Learn about Cord Blood from STCF & StemCyte

Recognized as the world’s largest international pre-collegiate science competition, Intel ISEF is sometimes referred to as the “Olympics of Science Fairs” welcoming the brightest STEM students from more than 75 different countries.  This year Save the Cord Foundation is proud to announce that we will be there!! Together with our friends at StemCyte, Inc., we will be bringing cord blood education to the Next Generation of scientists, doctors, nurses and community leaders via this prestigious event.

Each year, millions of students compete worldwide in local and school-sponsored science fairs for an opportunity to showcase their independent research and compete for approximately $4 million in prizes at the Intel International Science and Engineering Fair (Intel ISEF 2017), a program of Society for Science & the Public. Visit the official site here.

Nearly 5000 students, their teachers and mentors from more than 75 different countries attend this event annually. The research presented by students is of the highest calibre.  For example, last year’s Gordon E. Moore Award winner was Han Jie (Austin) Wang, an 18-year-old from Canada who broke new ground with his research: Boosting MFC Biocatalyst Performance: A Novel Gene Identification and Consortia Engineering Approach.

 

Intel ISEF 2017 at the Los Angeles Convention Center:  May 14-19th, 2017
Schools and the general public are welcome on “Intel ISEF Public Day” on May 18th, 2017

Learn more. Register to attend Intel ISEF 2017.

Despite decades of use in the treatment of 80+ diseases in more than 35,000 transplants worldwide, the topic of sourcing stem cells from cord blood has never been formally presented at Intel ISEF. Thus, Intel ISEF 2017 presents a unique opportunity for our team to break new ground by introducing this topic tomorrow’s leading scientists, doctors and community leaders.  Together, StemCyte, Inc. and Save the Cord Foundation will form a dynamic team whose goal will be to increase cord blood awareness and spark an interest in cord blood research by these outstanding STEM students.

STEM students prepare for Intel ISEF

Preparing for the arrival of 1700 finalists at Intel ISEF

During the course of this multi-day event, our team will be welcoming students, their teachers and representatives from countries around the world to engage in a variety of interactive demonstrations regarding the collection of cord blood, the preservation process, testing and eventual use of these valuable, non-controversial stem cells. In addition, the team will be hosting a symposium dedicated to cord blood featuring one of the world’s outstanding neuroscientist, Dr. Wise Young, M.D., Ph.D.. Dr. Young is the Global Medical Director for StemCyte, Inc., Distinguished Professor, founding director of the W.M. Keck Center for Collaborative Neuroscience.

Wise Young Intel ISEF - StemcyteDuring the symposium, Dr. Young will speak about cord blood’s critical role in regenerative medicine and potential treatments using cord blood for spinal cord injuries.  An engaging speaker and pioneer in the field, Dr. Young will speak to students about ground-breaking clinical trials he is leading across China, Taiwan, Hong Kong and as well as those more recently the United States, Norway and India. Dr. Young will also discuss the growing need for cord blood globally with regards to current applications and potential developments in the medical world that could stimulate a sudden increase in demand.

Students who attend Intel ISEF will be encouraged to participate in the NEXT GENERATION: Cord Blood program and to share this program with others in their communities when they return home. Students will have the opportunity to register for a free NEXT GENERATION account and newsletter focused exclusively on cord blood.

A word about our partner for this special event. . .

StemCyte, Inc. is a hybrid cord blood bank (providing both public and private cord blood banking) with locations in the US, India and Taiwan.  As one of the largest and most racially diverse cord blood stem cell banks in the world, StemCyte is actively involved in the development of new umbilical cord blood-based cell therapies. The Company supports the largest clinical study for using unrelated cord blood transplantation for thalassemia, one of the most common genetic diseases in the world, and the developments of trials investigating regenerative spinal cord therapies. To learn more visit StemCyte’s official site.

We wish to thank StemCyte,Inc. for their generous support.

 

 

Photo credits:
Top photo: Nathan Han, of Boston, Massachusetts, who won the Intel ISEF 2014 Gordon E. Moore Award, celebrated with the finalists from Massachusetts (Chris Ayers Photography/Society for Science & the Public)
Middle photo: Preparations behind-the-scenes for Intel ISEF (April Rietze Photography/Society for Science & the Public)
Bottom photo: Dr. Wise Young (Rutgers University/W.M. Keck Center for Collaborative Neuroscience)

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About Save the Cord Foundation

Save the Cord Foundation, a 501c3 non-profit organization, was established to promote awareness of the life-saving benefits of cord blood based on unbiased and factual information. The Foundation educates parents, health professionals and the general public about the need to preserve this valuable medical resource while providing information on both public cord blood donation programs and family cord blood banks worldwide.

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