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.

 

 

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.

 

 

Two Kids Fight Cancer & Cerebral Palsy with Cord Blood (as seen in USA Today)

Two Kids Fight Cancer & Cerebral Palsy with Cord Blood (as seen in USA Today)

dylan praskins cord blood recipient

Being a kid! 6 years after his cord blood transplant, Dylan is having fun.

For USA Today, Save the Cord Foundation was recently asked to speak about treatments using cord blood to treat cancer and cerebral palsy. We took this opportunity to introduce readers to two amazing young boys whose lives have been forever changed thanks to cord blood. Meet Dylan and Ashton.

Read the full article published in a special edition of USA Today, “Expecting Parents.”

Dylan Fought Leukemia and Won

Born in April 2009, Dylan Praskins was diagnosed with infant leukemia or ALL (Acute Lymphocytic Leukemia) at only 8 weeks old. We have followed Dylan’s story since he was diagnosed. Against incredible odds, he won his fight against cancer thanks to cord blood.

Dylan’s case demonstrates why public cord blood donation is so important.

Read more about Dylan here.

Diagnosed with Cerebral Palsy, Ashton Said Good-Bye to his Wheelchair

Viacord Cord blood for cerebral palsy

Ashton was 6 weeks old when he was diagnosed with cerebral palsy. The diagnosis was not expected but luckily, Ashton’s parents had saved his cord blood at birth. At the age of 5, Ashton received his own cord blood stem cells in a simple 20-minute transfusion. Signs of improvement quickly followed.

Learn more about private cord blood banking (or “family banking”).

 

Ashton’s story is not unique. Research using cord blood to treat cerebral palsy, autism, diabetes and more is advancing quickly. As a source of non-controversial stem cells, cord blood is at the forefront of regenerative medicine. Learn more about the science that is helping these two boys have a second chance at life.

Read the full article (as seen in USA Today) to learn more.

 

 

Join the Cord Blood Movement

Public and private cord blood banking are both important. At Save the Cord Foundation, we recognize that every family is different. For some, public banking provides a way for to help others and make use of a valuable resource which would otherwise be thrown away. For others, their family history or personal medical history may mean that private cord blood banking is a priority. Some parents don’t have a public banking option and so choose to privately store their child’s cord blood so that it is not thrown away simply as medical waste.

Regardless of your choice, one thing is clear. Even though cord blood is currently being used to treat over 80 different diseases, we are just starting to understand the potential of this fantastic medical resource. Saving cord blood is the ultimate in recycling. Join the #cordbloodmovement today. Tell a friend about Dylan and Ashton. Encourage them to learn more @SaveTheCord. Empower them with knowledge so that they can make the right choice for them. #SaveTheCord

Click here to get involved and spread the word.

NEWS: Nebraska 1st Ever Double Cord Blood Transplant to Treat 13-Year Old with Leukemia

NEWS: Nebraska 1st Ever Double Cord Blood Transplant to Treat 13-Year Old with Leukemia

Ready to smile?  This week young Joseph Cruz, or “J-Money” as one of the nurses call him, has received a double cord blood transplant to treat Acute Myeloid Leukemia (AML).  Doctors at the Nebraska Medicine say that this is first time ever that a double cord blood transplant has been performed in the state of Nebraska.

Diagnosed with leukemia over a year and half ago, doctors desperately tried to find a stem cell match for Joseph. Incredibly, they were not able to find a match for Joseph even though he has 9 brothers and sisters.  They also searched the national registries for bone marrow. Ultimately, it was the training and insight of Dr. Sachit Patel that led them to giving cord blood a chance.

Joseph’s story is yet another reminder of how valuable cord blood is to the medical community and patients desperately waiting for a stem cell match.  Thanks to two families who chose to donate their child’s cord blood at birth, Joseph will have a second chance at life. Imagine if this option had not been available. Cord blood is Joseph’s #CancerMoonshot!

Read more about Joseph and view this interview with him filmed just after his transplant. 

We want to wish Joseph a speedy recovery and thank all of those parents out there who are giving cancer patients a second chance thanks to cord blood.

We also want to acknowledge the outstanding leadership shown by the medical team at Nebraska Medicine who pushed to find a treatment for Joseph. You are fighting childhood cancer head on! Bravo!

Source: Channel 6 WOWT Nebraska

 

  *  *  *

Do you want to learn more about how
cord blood is being used to fight cancer?  

Read about more cord blood transplant recipients, like Joseph,
in our “#WeCanICan: Beat Cancer with Cord Blood” series.

Diane Paradise, Hodgkins Lymphoma cancer survivor thanks to cord blood.

 

 

 

NEWS: CryoSave, CryoHoldco and China Cord Blood Corporation Compared by BioInformant

NEWS: CryoSave, CryoHoldco and China Cord Blood Corporation Compared by BioInformant

Groups like CryoSave, CryoHoldco and China Cord Blood Corporation dominate the international scene of the cord blood industry.

Outside of the US, private cord blood banks often cross international borders and face regulations that are very different from the US. CryoSave, CryoHoldco and China Cord Blood Corporation are three of the largest international banks. But, what do you know about them?

As a parent, you may be feeling confused when you see these names. Perhaps you have never heard of them before?  You are not alone. You may only know these names if they are actively advertising in your country.

Countries vary greatly in their regulations for cord blood. Some have no rules. Others have very strict rules. Rules can even vary from region to region — for example, in Sweden.

The world is a big place and being an international player in the cord blood industry is not easy. Logistics and politics can be challenging.  In some places, private banks are not allowed and only public banks exist but in very limited numbers. In many places, public banks do not exist (yet) and the private players control the market. The industry is still evolving.

At Save the Cord Foundation, we do not and will not recommend one bank over another. We recognize that both big and small banks have their advantages. Likewise, we see a role for both public and private banks…especially when they work together.  The industry is constantly changing. We have seen major changes across the board in recent years even with large groups like CryoSave, CryoHoldco and the China Cord Blood Corporation.

Our role at the Foundation is not to choose for you. We want to help you ask the right questions and get the facts.

We feel strongly that parents need to talk to the banks that interest them, ask great questions, and choose a bank based on their own personal priorities. You have options. . . lots of options.

CryoSave_CryoHoldco_Collect cord blood in majority births

Some banks specialize in areas or offer programs that could be important to your particular family. Some may not advertise these programs but they exist behind the scenes and all you need to do is ask.

The key is to be proactive.

Begin your research here, at Save the Cord Foundation.

Then, explore the sites of some of our partners like Be The Match or BioInformant.

In particular, BioInformant is internationally recognized for their studies of the stem cell market. In a recent article, the group focused on three of the largest international cord blood banks, including:

  • CryoSave
  • CryoHoldco
  • China Cord Blood Corporation

In the article, Cade Hildreth, CEO of BioInformant, explains “we compare the three largest cord blood banks outside of the United States. In this analysis, the metrics used to identify the top three international cord blood banks was the number of cord blood and cord tissue units stored, number of transplants, rate of growth, and regions served.”

We encourage you to read the full article from BioInformant which compares these three banks.

“Comparison of the Top 3 International Cord Blood Banks – Cryo-Save, CryoHoldco, China Cord Blood Corporation”
Click here to read the full article.

Bioinformant - Partner in Cord Blood Education


Did you know cord blood has been used for many years to treat various forms of cancer? It’s true. In particular, cord blood is often used to treat leukemia, lymphoma and sickle cell.

#WeCanICan: #BeatCancer with Cord Blood

#WeCanICan: #BeatCancer with Cord Blood

In association with World Cancer Day, we launched a series of stories focused on cancer survivors who were helped by cord blood.

We encourage you to meet Nathan, a 3-time cancer survivor who refers to himself as “3-Peat”. He is an amazing person whose life was saved thanks to cord blood. Read Nathan’s story.

Next, meet Diane, a woman who does not take “no hope” as an answer! Thanks to her persistence and the life-saving qualities of cord blood, Diane beat Hodgkins Lymphoma and is forever grateful to the 2 families who donated their children’s cord blood. Read Diane’s story.

Learn more about work with World Cancer Day and find out how you can get involved!

 

NEWS: CBR, Viacord and CryoCell Compared by BioInformant

NEWS: CBR, Viacord and CryoCell Compared by BioInformant

Big names like CBR, Viacord and CryoCell International tend to dominate the cord blood industry. But, . . .

The truth is the cord blood industry is vast and complicated. Beyond Cord Blood Registry / CBR, Viacord and CryoCell there are many reputable players. Indeed for parents who are interested in private or family cord blood banking, the are plenty of options (perhaps too many).

At Save the Cord Foundation, we do not and will not recommend one bank over another. We recognize that both big and small banks have their advantages. The industry is in constant flux as well. Even the big groups like CBR, Viacord and CryoCell International have undergone major changes in the past few years.

Give life twice. Save cord blood.

Get the facts. Save the cord.

We feel strongly that parents need to talk to the banks that interest them, ask great questions, and choose a bank based on their own personal priorities. You have options. . . lots of options.

Some banks specialize in areas or offer programs that could be important to your particular family. Some may not advertise these programs but they exist behind the scenes and all you need to do is ask.

So please, do your research thoroughly (it is more important than choosing a baby buggy).

Begin your research here, at Save the Cord Foundation.

Then, explore the sites of some of our partners like Be The Match or BioInformant.

In particular, BioInformant is internationally recognized for their studies of the stem cell market. In a recent article, they focused on some of the biggest names in private cord blood banking including CBR, Viacord, and CryoCell International.

According to Cade Hildreth, CEO of BioInformant, “These three companies are not only the three market leaders in the United States by number of cord blood and cord tissue units banked, but are also some of the largest cord blood banks worldwide.”

We encourage you to read the full article from BioInformant which compares these three banks.

“Comparison of the Top 3 U.S. Cord Blood Banks – CBR, ViaCord, and CryoCell International”
Click here to read the full article. 

 

Bioinformant - Partner in Cord Blood Education


 

Did you know cord blood has been used for many years to treat various forms of cancer? It’s true. In particular, cord blood is often used to treat leukemia, lymphoma and sickle cell. 

#WeCanICan: #BeatCancer with Cord Blood

#WeCanICan: #BeatCancer with Cord Blood

In association with World Cancer Day, we launched a series of stories focused on cancer survivors who were helped by cord blood.

We encourage you to meet Nathan, a 3-time cancer survivor who refers to himself as “3-Peat”. He is an amazing person whose life was saved thanks to cord blood. Read Nathan’s story.

Next, meet Diane, a woman who does not take “no hope” as an answer! Thanks to her persistence and the life-saving qualities of cord blood, Diane beat Hodgkins Lymphoma and is forever grateful to the 2 families who donated their children’s cord blood. Read Diane’s story. 

Learn more about work with World Cancer Day and find out how you can get involved!

Loving Letter from Doctor & Father of Three Kids

Loving Letter from Doctor & Father of Three Kids

The following is a letter we received recently from Dr. Eric Callaghan, a practicing physician and father of three from Wisconsin.

Dr. Callaghan has kindly allowed us share his story. It demonstrates some of the common problems parents encounter today whether they are family banking or donating their child’s cord blood. At Save the Cord Foundation, we are working daily to help solve some of these issues through the education of health professionals and parents.

 

Dear fellow parents and expectant parents,

As a physician and father to three young daughters, I am aware of the vast potential of cord blood. My wife and I have chosen to bank the cord blood of each of our daughters.

With our first two daughters (ages 10 and 7), we utilized private cord blood banking and were unaware of the option for public banking. With our third daughter, Grace (age 1), we became aware of the public option and in choosing such, we were hoping that someday the first act of our newborn’s life would be one of generosity and compassion.

After we made the decision to donate to a public bank, we had a difficult time finding a suitable company, since our hospital was not affiliated with a particular public cord blood bank. Our options were unfortunately limited; our obstetrics group was relatively unfamiliar with public options and procedures, and one of the companies we considered would not accept public cord blood donation if the baby was born during specific hours over the weekend.

We eventually chose a company who we were very happy with, but unfortunately the amount of cord blood which was obtained from our baby was relatively low and we are unsure if it was ever suitable for banking (or if it ended up being used for research or other purposes).

Dr. Callaghan chose a hybrid cord blood bank. Why?

Unfortunately, the majority of hospitals in the world do not offer a public donation program for cord blood. There are various reasons for this (awareness, costs, logistics…).

Dr. Callaghan and his wife were very passionate about wanting to donate their third child’s cord blood. They contacted a hybrid cord blood bank who was willing to collect cord blood donations at their hospital. Hybrid banks often fill the gap when a public program does not exist locally.

Learn more about hybrid cord blood banks by clicking here.

I am uncertain if the low yield of cord blood from Grace’s birth was inevitable, but I do not believe that our experience is unique as the company that we chose later ended up limiting their acceptance of cord blood donation to specific states, likely at least partially due to the inconsistencies in the amount of cord blood obtained from various hospitals and practices.

Save the Cord Foundation is helping to spread the word about the vast benefits of cord blood banking. Increasing public and medical awareness of the benefits of public cord blood donation will save lives, as will increasing accessibility and options for public banking.

As a physician, I can tell you, the applicability of cord blood is increasing, but we need to ensure that couples and their obstetricians are aware of these benefits and have easy, convenient access to public banking.

If more parents knew that their child’s first act in the world would be in providing a life-saving cure for a specific disease, the results and impact could be exponential for patients and our entire medical community.

Yours truly,

Eric Callaghan, MD

 


Putting our family first. . .

Dr. Callaghan is like many parents. He is a father who wants the best for his children. He is fortunate. He had access to information on cord blood and understood the potential life-saving benefits of this medical resource. He was able to make an educated decision — the best decision a father could make.

We are proud of you Dr. Callaghan. You were pro-active about the cord blood collection process for all of your children and now your story will help others. Thank you for writing to us.


Are you pregnant?

Are you wondering what the pros and cons are of either cord blood donation or family banking?
Watch this quick video to understand your options. Then, read about people whose lives have been saved thanks to cord blood:

You will agree… regardless of what others might say…cord blood has powerful healing powers and can help someone (maybe even your own child) if we just take a moment to save it.

Learn about your options here.

GUEST POST: Hawaii Sees High Percentage of Multi-Ethnic Cord Blood Donors (part 2)

GUEST POST: Hawaii Sees High Percentage of Multi-Ethnic Cord Blood Donors (part 2)

Continued from part one: Guest post written by Dr. Randal Wada, Linda Watanabe and the wonderful team at Hawaii Cord Blood Bank
Dr. Randal Wada and the team at Hawaii Cord Blood Bank

Proud team at Hawai‘i Cord Blood Bank (left to right), should be: Dr. Randal Wada, President and Medical Director, Charis Ober from Save the Cord Foundation, Linda Watanabe, Administrative Manager, Lynette Matsumoto, Program Coordinator, Allison Sears, Donor Coordinator, Lisa Wong-Yamamoto, Nurse Educator.

Although founded to serve the people of Hawaii to fill the critical need for cord blood from multi-ethnic donors, HCBB has also proven to be a valuable resource for patients of Asian, Polynesian, or mixed ethnicity worldwide.

The Hawaii Cord Blood Bank is addressing an important need through its umbilical cord blood banking efforts, which help to increase access to transplant for minority patients in Hawaii and throughout the world.

Thanks to the hard work and devotion of hundreds of doctors and nurses who volunteer their time on our behalf, we offer cord blood donations at all five birthing hospitals on Oahu at the Kaiser Permanente Medical Center, Kapiolani Medical Center for Women and Children, The Queens Medical Center, Tripler Army Medical Center, and Castle Medical Center as well as on Maui at the Maui Memorial Medical Center.

Mixed Race Cord Blood Donors - HCBB

Donor Maribeth Toledo‐ Cabuslay with Baby Ryan and Nurse Educator Lisa Wong‐Yamamoto, RNC as they wait to be interviewed by Hawai’i News Now newscasters

Our cord blood units are sent to our partners at Bloodworks Northwest in Seattle for processing and storage. Cord blood units collected by the Hawaii Cord Blood Bank are listed with the National Marrow Donor Program’s network of cord blood banks.

HCBB is a small organization, yet we have collected over 10,000 units and stored over 3,000 cord blood units of which approximately 87% of our cord blood units collected are from minority or multi-ethnic donors.

Hawaii’s unique racial demographics make Hawaii Cord Blood Bank a national model for a system of cord blood collection and banking that is truly capable of reflecting the full spectrum of ethnic diversity within the population it seeks to serve.

 

Hawai'i Cord Blood Blank, Sharing the Gift of Life

 

We wish to thank the team at Hawaii Cord Blood Bank for this wonderful guest post and for the noble work they do everyday collecting cord blood and helping patients worldwide who are desperately waiting for a stem cell donor. You can learn more about the Hawaii Cord Blood Bank here.

Go back to part one of this article.

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GUEST POST:  Hawaii Cord Blood Bank – Sharing the Gift of Life

GUEST POST: Hawaii Cord Blood Bank – Sharing the Gift of Life

Guest post written by Dr. Randal Wada, Linda Watanabe and the wonderful team at Hawaii Cord Blood Bank

Hawai'i Cord Blood Blank, Sharing the Gift of Life

The Hawaii Cord Blood Bank (HCBB) is an independent, non-profit community service organization which began operations in 1998 as a means to help the challenge of finding donors for Hawaii’s ethnically diverse patient population.

A growing proportion of Hawaii’s population is comprised of people from multiple race/mixed ethnicity backgrounds.

According to the 2010 census, there has been a 32% increase in the multiple race segment of our population over the last decade, and Hawaii leads this national trend with 23% of the State’s population reporting two or more races.

This becomes a challenge when patients from Hawaii are searching for a matching bone marrow or stem cell donor since the majority of donors in our national registry are Caucasian, while donors from minorities (African American, Asian, Pacific Islanders) are underrepresented.

Mixed race patients may have inherited a tissue type that is common in one of their parent’s ethnic group, and another tissue type that is common in the other parent’s ethnic group. The combination of these two common types is often uncommon.

The diversity of Hawaii’s population is the main reason Hawaii patients needing stem cell transplants have an especially difficult time finding matching donors.

Although founded to serve the people of Hawaii to fill the critical need for cord blood from multi-ethnic donors, HCBB (click to continue reading). . .

Go to part two of this article.


ARE YOU JUST STARTING TO LEARN ABOUT CORD BLOOD?

Get involved. Join the cord blood movement.

Get involved. Register for our newsletter, make a donation. Make a difference.

You must have tons of questions. Perhaps, you have become confused by something you read in the media? You are not the only one.

Take a minute to read through some of the most frequently asked questions.

Then, step over to our section on the latest research and learn how quickly cord blood is changing medicine.

We interview doctors and researchers constantly. Discover the latest in cord blood derived stem cell therapies and learn how they might help you or someone in your family.

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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