Rare, Two-Time Bone Marrow Donor: Sean Patterson (part three)

Rare, Two-Time Bone Marrow Donor: Sean Patterson (part three)

Part Three: Interview with two-time bone marrow donor, Sean Patterson

STCF:  How did you feel on the big day? What was it like to donate bone marrow? 

Sean Patterson discussing bone marrow donation and giving with elementary students.

Discussing his bone marrow donor story and “Blessing Bags” distributed by the 411 Foundation with third graders.

July 18, 2014…DONATION DAY!!!! Nothing could prepare me for the range of emotions that hit me on this day. My thoughts and prayers were and had always been with this little girl and her family and today was the day that they were going to have the CHANCE to win the fight. The donation process wasn’t nearly as bad as I thought it was going to be, but I could definitely tell that I had been stuck in the back a few times….OUCH!!! While the procedures varies slightly from hospital to hospital, generally, the doctors make several (typically one to four) small incisions through the skin over the back of the pelvic bones. The incisions are less than one-fourth inch long and do not require stitches. The doctors inserts a special hollow needle through these incisions over the rear of the pelvic bone with a syringe attached to the needle to draw out the marrow.

STCF:  Sean, your donor story is rare because you donated twice. Why?

Things didn’t go as planned with the little girl and the bone marrow and I was asked in early September 2014 if I would be willing to donate stem cells to assist the bone marrow process and what do you think my answer was to that…yup you guessed it I said YES!!! The stem cell donation was scheduled for October 20, 2014, but before I was able to donate I had to do five days of Filgrastim injections. These injections had my body sore and this felt worse that any part of the bone marrow donation, but I wouldn’t change anything about the process to give this little girl a chance.

October 20, 2014…STEM CELL DONATION DAY. This donation was done through a process called apheresis, which is similar to donating plasma. During apheresis, a needle is placed into each of your arms. Blood is removed from a vein in one arm and passed through tubing into a blood cell separator machine. The machine collects blood-forming cells, platelets, and some white blood cells. Plasma and red blood cells are returned to your body through the other arm. All the tubing used in the machine is sterile and is used only once for your donation. Seventy-five percent of all PBSC donations are completed in one apheresis session, which may last up to eight hours. The remaining 25 percent of donations are completed in two apheresis sessions, which will take four to six hours each day. My donation was completed in three hours.

The last update I received in December of 2014 was the little girl’s body hadn’t fully accepted my bone marrow or stem cells, but I was hopeful that it would. At first I took this personally and felt like a failure until friends and family pointed out that I had done my part and I had given this little girl A CHANCE!!

Sadly, I received a call on April 3, 2015 that the little girl had passed away. I didn’t feel like I had done enough to help her, but everyone let me know that I had given the family more time with her.

STCF:  Sean, we agree with your friends and family that you did the most that anyone could do to help this little girl.  Indeed, you have gone well beyond the call of duty by encouraging others to donate as well. Your compassion has led you to do wonderful things via your foundation. Tell us about the foundation and the work you do. 

411Foundation_Sean PattersonOn April 26, 2014, the 411 Foundation held a donor registration drive and was able to get forty new donors registered. These forty new donors give more individuals and families the CHANCE of winning their fight with blood cancer.

 

 

 

 

STCF:  Sean, you agree with us that both bone marrow donation and cord blood donation are important. The collection processes for each could not be more different. Cord blood can only be collected at birth. . . a fleeting, precious moment. What is your advice to expectant parents? 

My advice to parents is to really consider donating cord blood. By donating, parents could save a life. This process doesn’t hurt anyone, but it could help someone and that’s all that matters.

STCF:  Thank you, Sean, for spending time with us today. Your compassion is certainly contagious!!

Give life twice. #SAVETHECORD

Go back to part two: Sean Patterson


You can make a difference.

Donate your baby’s cord blood and/or become a bone marrow donor yourself.

Read more about Sean’s story here.

 BETHEMATCH Sean Patterson


Pregnant? Want to donate cord blood?

We can help. Find a hospital with public donation program or contact a hybrid bank to help you.

Cord blood banking saves lives.

Sean Patterson: Bone Marrow Donor Story (part two)

Sean Patterson: Bone Marrow Donor Story (part two)

Part Two:  Interview with Sean Patterson: Bone Marrow Donor Story

Sean Patterson Bone Marrow Donor Story

Sean Patterson with his son, Isaac

STCF:  How did you find out that you were a match for someone? What was the process?

I was not a match and neither were my fellow co-workers for a possible donation to our co-worker and she passed away in January of 2013. At the time I didn’t really understand the process so I thought this was the end of my donor experience until I received an email from Be The Match on March 12, 2014 that read “You may be a possible match for an eight year old girl so please call us if you are still interested in being a donor”. I made the call immediately and went through the questionnaire to see if I would be moving on to blood testing. At the end this phone conversation an appointment to draw blood was scheduled for the next day March 13, 2014. I got an email letting me know that I would be notified in 60 days on whether or not I was a match for the little girl.

April 7, 2014 I got a call from Be The Match and I heard the sweetest words ever…”You are the best possible match for the girl. Do you still want to donate bone marrow?” My answer was a quick and definitive…YES!!! This call came three days after my son’s seventh birthday and from the time I got the first email in March I always thought about what if this was my son in this situation, I would hope that someone would be eager enough to help him.

STCF:  Some people are nervous about donating bone marrow once they learn that they are a match for someone in need. What is your advice to them?  

My focus was giving this little girl a chance and no matter how much people said it was going to hurt it didn’t bother me because I knew that my discomfort from the bone marrow donation would be gone in a few days compared to what this little girl was going through day after day for who knows how long.

There were many emails, test, phone calls, long days and plenty of people from Be The Match asking me “Are you sure that you want to do this” and my answer was ALWAYS the same…..YES!!! I asked the Be The Match to please note on my record that I’m not going to change my mind so they don’t need to ask me if I’m sure because I’ve never been so sure!!

STCF:  Unfortunately, many patients suffering from blood cancers like leukemia, lymphoma and sickle cell anemia never find a bone marrow donor match. Many of these patients are of African American origin. They face additional challenges in finding a match via the National Bone Marrow Registry because there are significantly fewer African American donors.  In these cases, doctors often turn to cord blood as a possible source of stem cells. Increasingly, we are seeing amazing results from these cord blood transplants, especially when treating blood cancers.  

Why do you think the national registry of bone marrow donors lacks donors of African American origin? How could this be improved?  What are your feelings on cord blood donation and how can we encourage African American / Mixed Race parents to donate their child’s cord blood?

I think that a lot of African Americans don’t donate because they have heard that it is painful or that there are side effects so this keeps people from even being tested. Some of the other reasons may be religious reasons or not trusting that the bone marrow or cord blood will be allocated evenly.

 

Go back to part one: Sean Patterson

Go forward to part three: Sean Patterson


Are you surprised to hear how difficult it is for African Americans to find a stem cell donor?

Ethnic minorities are terribly underrepresented in the national bone marrow registry.  We see a similar trend in the national cord blood registry as well. Currently, it is estimated that “for African Americans and other minorities, the chances of finding a match can be as low as 66%, versus 93% for Caucasians.” (source: BeTheMatch).

To understand how a bone marrow or cord blood donation can save someone’s life.  . . read about Judge Fox, a North Carolina Judge who fought the odds and won — thanks to cord blood.

Judge Fox Receives Cord Blood Transplant

Donor Story: Sean Patterson Sets a New Standard in Giving

Donor Story: Sean Patterson Sets a New Standard in Giving

It is not everyday that you meet an angel but we think we may have found one in Sean Patterson.  His donor story is unusual because he actually donated bone marrow stem cells not once, but twice!

Sean’s donor story is one of giving. He stands as an example to us all of how easy (and necessary) it is to help each other, help a stranger and become someone greater by donating bone marrow and/or cord blood stem cells. Indeed, Sean has become someone greater. By donating bone marrow twice, he has set a new standard in giving.

We met Sean through an event for Be The Match where he was being honored for his generosity and amazing compassion. As founder of the 411 Foundation, a non-profit focused on helping young adults, Sean’s sense of giving boils over into everything he does. We spoke with him about the importance of giving, the work he does at the 411 Foundation and why he sees bone marrow and cord blood donation as an obvious choice.

Warning: Sean Patterson’s sense of compassion and giving is contagious!

Sean Patterson and Mom

Two-time Donor: Sean Patterson with his mother

STCF: Sean, why did you donate bone marrow? How does your donor story begin?

John Bunyan said “You have not lived a day until you have done something for someone who can never repay you” and being a donor for Be The Match is exactly that opportunity to do something for someone who could never repay you. The reality is that we don’t sign up to be a donor so that someone can repay us, we sign up to be a donor because we want to give individuals and families the opportunity to make memories and enjoy life.

My Be The Match donor story starts on September 26, 2012 when my employer held a donor drive for a co-worker who was in need of a bone marrow transplant. Signing up to be a donor was an opportunity to possibly help save someone’s life so I jumped at the chance and many of my co-workers did the same with the hopes that a match could help save a life. The process was easy …a simple cheek swab and some paper work. The hardest part was waiting to find out if I was match or not.

Go forward to part two: Sean Patterson


Did you know that cord blood is often the best option for patients suffering from blood cancers like leukemia, lymphoma and sickle cell anemia?  Meet Nathan or Dylan and see how cord blood can save lives, not tomorrow but today.

nathan mumford cancer survivor cord blood for leukemia

cord blood transplant recipient leukemia

Cord blood is currently used to treat over 80 different diseases and, in most of these cases, the cord blood is donated by a stranger. Cord blood donation is not available everywhere but Save the Cord Foundation is working to change that.

Learn about wonderful public cord blood donation programs like:

Arizona Public Cord Blood Program

Jeevan Public Cord Blood Program in India

Hybrid banks that support public cord blood donation nationwide

Support the work we are doing at Save the Cord Foundation. Donate today.

GUEST POST:  We are Having a Baby! A Father’s Advice on Cord Blood

GUEST POST: We are Having a Baby! A Father’s Advice on Cord Blood

When talking about cord blood, we must not forget the father’s opinion. He brings a unique perspective to the decision making process.  Save the Cord Foundation recently reached out to several fathers who, along with the rest of their family, agreed to save their baby’s cord blood. This is the first in a series of guest blog posts from fathers.

A longtime supporter of Save the Cord Foundation, Donald Hudspepth, father and General Manager at LifeForce Cryobanks, had some very good points to make on why dads everywhere should get more involved in supporting cord blood preservation. The following is his advice to future parents everywhere.

“We are having a baby!”  Along with “Yes, I’ll Marry you” and “I Do”, these are some of the most exciting (and scariest) words a guy can hear. Your mind races at breakneck speed to comprehend all the possibilities. But let me tell you, there is nothing better than holding your newborn and seeing that first smile! (They’ll tell you it’s just gas, but you’ll know the truth!) But now what? You’ve got another mouth to feed and someone to protect from this harsh, cruel world.

It’s never too early to start thinking about protecting or “taking care” of your children. Whether it’s starting a college fund or savings account, setting up simple life insurance, “baby-proofing” the house (there’s NO such thing!), or watching You-tube how-to videos, it’s never too early!

So, I would like to talk with you about something you and mom can do now, before the baby is born, to help protect and take care of your baby and family….umbilical cord blood banking. The blood remaining in the umbilical cord after the baby is born is rich in stem cells. These cells are the building blocks for the entire body, bones, muscles, blood, organs, everything. As such, they can be stored to be used at a later date to treat over 75 diseases.

Currently, cord blood stem cells are used as an alternative source to bone marrow to treat various leukemias, lymphomas, anemias, and enzyme deficiency diseases. Clinical trials are ongoing to look at using stem cells to treat most every major disease we can study. Things like Alzheimer’s, Parkinson’s, stroke, cerebral palsy, diabetes, heart attack, spinal injury and the list goes on. These cells have a huge potential for treating tens of millions of people worldwide.

Now, is your one time to collect them. Save them from the medical waste trash and let them be the tiny miracles they were created to be. Private family banking is widely available and at a wide range of prices. Do your research and find a company that you are comfortable using. Call them and ask questions. Speak to your doctor about your family medical history to determine your future potential risks. Speak with each other to determine if you can financially add stem cell banking to your budget (many companies offer long term financing options). Knowledge is key.

But, I ask, from one parent to another, please, please, please consider your options. Private banking admittedly is not for everyone. But, you can also donate the cord blood to be used to help treat anyone in the world in need of a stem cell transplant. Either way, it doesn’t end up in the hospital trash can. You are about to begin the most significant part of your life as you raise and care for your newborn. As with everything else you will do, knowledge of your options, doing research to understand them, and discussions with your partner will guide you to a successful outcome.

Congratulations on your pregnancy! I wish you all the best of luck and a most happy and enjoyable life together surrounded by love!

~ Donald Hudspeth

Give life twice. #SAVETHECORD.


Learn more about family banking at LifeForce Cryobanks or discover how you can donate your baby’s cord blood via the popular “Cord for Life” program sponsored by LifeForce Cryobanks.

cord-for-life  LifeForce Cryobanks

Dylan Praskins: Cord Blood for Leukemia (part 2)

Dylan Praskins: Cord Blood for Leukemia (part 2)

Continued. . . Dylan Praskins: Being a kid! (Cord blood for leukemia)

(Go back to part 1 of this article.)

As this video points out, Dylan’s case was special because he was only 2 months old when he was diagnosed with leukemia. Doctors were consulted around the world to advise on how to deal with this situation. Because cord blood had been used with success in other cases of leukemia, it was decided that this would be the best option for Dylan. Luckily, a match was found and he received his transplant before turning even 6 months old.

Now, 5 years later, Dylan is still cancer-free. His family and doctors are so pleased. As his father mentions in the video, “Fast forward five years and we were just able to celebrate five years of Dylan being in remission. . . cancer-free which is amazing. . . Five is that magic number. . . which the doctors think that the cancer won’t come back.”

Dylan’s response to the cord blood transplant for Leukemia has been amazing to watch. However, as with any aggressive cancer treatment, there have been side effects. Dylan developed glaucoma and continues to go through rigorous check-ups to make sure the leukemia is not coming back or that other problems are developing. He is healthy and growing but, as you can imagine, under close watch.

What does this mean for others suffering from leukemia?

Keep in mind that no two patients diagnosed with leukemia are the same and that only your doctor can advise if a cord blood transplant is recommended for you; however, one thing is for sure. . . cord blood donors are needed just as much as bone marrow donors if not more.  Donor matching with cord blood is far easier than with bone marrow because there are far fewer criteria (see our Fast Facts); however, there is still a real need for cord blood donations everyone and especially from ethnic minorities.

Treating ALL with Bone Marrow or Cord Blood:
“There are two types of blood and marrow transplants: allogeneic and autologous. An allogeneic transplant uses healthy blood-forming cells from a family member, unrelated donor, or umbilical cord blood unit. An autologous transplant uses the patient’s own blood-forming cells which are collected and stored. Most transplants for ALL are allogeneic. Autologous transplant isn’t usually used for ALL because the risk of relapse (a return of the disease) is higher than with allogeneic transplant.” (Source: https://bethematch.org/For-Patients-and-Families/Learning-about-your-disease/Acute-lymphoblastic-leukemia/How-transplant-can-treat-ALL/, accessed 5 November 2015)

Dylan and his family are happy to share their story with you because they hope that it will convince others to donate their child’s cord blood. Dylan is living proof of how this simple gesture can save a life.

Collecting cord blood is a simple procedure and does not harm the mother or the baby in anyway. If you do not ask to have your baby’s cord blood saved, either privately or publicly, it will just be thrown away as medical waste. Unfortunately, this is the standard procedure in most hospitals although we are working to change this at Save the Cord Foundation. To throw cord blood away is wasteful. If you are pregnant, please communicate this in your birth plan or when talking about your pregnancy with your doctor.

Find out if there is a public cord blood donation program in your area. Go to our Global Map to locate one near you. If you do not find a program near you, another option is to contact one of the hybrid banks on our list many of whom offer collection nationwide regardless of your hospital’s affiliation.

If you live in the state of Arizona, you may wish to consider donating your child’s cord blood to the Arizona Public Cord Blood Program where it can be used to help treat kids and adults with leukemia or 80 other diseases. Find out more about this easy to use program here.

Give life twice. Save the cord.

(Go back to part 1 of this article.)


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.

Double Logo - Save the Cord Foundation - AZ Public Cord Blood Program

GUEST POST: Giving Hope to Indian Children with Thalassemia

GUEST POST: Giving Hope to Indian Children with Thalassemia

“Jeevan Blood Bank:  Giving Hope to Indian Children with Thalassemia”:  Guest post written by Dr. Saranya Narayan MD, Cofounder and Medical Director of Jeevan Blood Bank and Research Center
Dr. Saranya Narayan, Jeevan Blood Bank & Research Center

Dr. Saranya Narayan, Jeevan Blood Bank & Research Center

Save the Cord Foundation invited Dr. Saranya Narayan from Jeevan Blood Bank and Research Center to tell us about their growing public cord blood bank and how Jeevan Blood Bank is giving hope to Indian children with Thalassemia while maintaining internationally recognized standards of quality in collection and processing. 

Jeevan Blood Bank and Research Centre (Jeevan) started functioning on Sept 24th 1995, with the objective of making available the safest blood components on demand to patients in Chennai, India. There was a need that was felt very keenly which led to this decision.

Being a community blood bank in an era when voluntary blood donation was little understood, we faced a big challenge. Where did we hope to find truly altruistic and unrelated blood donors in this vast metropolis of Chennai? But find we did, steadily and surely. Over the last 20 years we have collected 135,692 voluntary donations and made available 301,610 units of the safest blood components.

In a few years, Jeevan started setting benchmarks in quality standards and came to be recognised as one of the leading blood banks in the country. Donor and recipient safety have always been of prime importance and the screening of donated units has always been more than the recommended mandatory testing requirements in India. In 1999, Jeevan was certified to ISO standards and in 2009, Jeevan became the state’s first independent blood bank to be accredited to 15189 standards in South of India, reinforcing our commitment to quality.

In 2005, once again, realising the disease burden we have in this country of Thalassemics (Thalassemia affects around 10,000 children born every year) and about 120,000 people being identified with haematological malignancies every year, the absence of a source for haematopietic stem cells was a major pain point.

What is Thalassemia?
“Thalassemia is an inherited (i.e., passed from parents to children through genes) blood disorder caused when the body doesn’t make enough of a protein called hemoglobin, an important part of red blood cells.” (Source: US Center for Disease Control, see link below)

With a population of 1.3 billion that climbs every second, the obvious choice for a source of stem cells was the donated umbilical cord blood. In 2007, the public cord blood bank started functioning. At the time there was no existing repository in India and if an Indian was lucky enough to be able to find a match in an US , European or Australian inventory, the cost of the stem cell unit and attendant transplantation costs was around 45,000 USD. Obviously far beyond the reach of any average Indian.

Giving hope to Indian Children with Thalassemia at Jeevan Blood Bank

Jeevan Blood Bank: Giving hope to Indian Children with Thalassemia

 

While our focus was therefore on setting up an inventory of 50,000 cord blood units to meet the urgent need of Indians and others, we also accepted cord blood from families that wanted to store their second child’s cord blood in the hope it would match the first child who suffered from a haematological disorder. Ethnicity being a major issue when it came to finding a suitable match, we wanted a good representation from the entire country, as that alone would help meet the needs of Indians globally.

In early 2013, this became possible as we received funding to the tune of 3 million USD in grants and loans. Till date we have collected over 8000 cord blood donations, almost 60% of the samples are rejected as they either did not meet our stringent sample acceptance or storage criteria. Our current inventory size is 4400 units. Jeevan also operates a high resolution HLA laboratory and offers HLA typing services to patients and donor campaigns.
Below is a pie chart that shows the distribution of the stem cell units stored based on the total nucleated cell counts:

pie chart jeevan cord blood bank

Distribution of Stem Cell Units (source: Jeevan Blood Bank and Research Center, India)

Currently the cord blood bank is certified to ISO standards, though it is run on AABB standards. We are working towards International accreditation at the earliest. We upload our database to BMDW on a regular basis. We receive requests from all over the world and of the 516 requests for HLA matches we have received so far, we have 62 that can be transplanted – 9/10 or 10/10 match.

Till date Jeevan has facilitated two successful transplants.

We have gotten this far with tremendous support of individuals, corporates, philanthropic organisations and the government. Building a large enough inventory with adequate representation of all the different regions in India is our priority and we do hope that we can involve the national government in our efforts.

To learn more about Jeevan Cord Blood Bank, click here.

Learn more about Thalassemia from the CDC website.


 

Give life twice. Save the Cord.

Cord blood can be collected in the majority of births.

Learn more about how cord blood stem cells.

>>Learn more about how stem cells from cord blood compare to stem cells from other sources.

NEWS:  North Carolina Cancer Hospital Helps Judge Fight Cancer With Cord Blood Transplant

NEWS: North Carolina Cancer Hospital Helps Judge Fight Cancer With Cord Blood Transplant

The North Carolina Cancer Hospital is helping Judge Carl Fox, 61, fight cancer thanks to a cord blood transplant. At Save the Cord Foundation, we have been actively following this story of an amazing man and an equally amazing team of doctors.

Judge Fox was diagnosed with myelodysplastic syndrome, a cancer “in which immature blood cells in the bone marrow do not mature or become healthy blood cells” (source: Cancer.gov).  The cord blood transplant was performed in the Fall of 2015 at the North Carolina Cancer Hospital following a desperate and ultimately unsuccessful search for a bone marrow donor.

 

Judge Fox was very instrumental during that time in increasing awareness around the lack of ethnic diverse bone marrow donors through numerous local bone marrow drives. Indeed, those drives have helped others but his doctors were still unable to find a match for him. Ultimately, his team of doctors at the North Carolina Cancer Hospital decided to look for a cord blood donor because there are fewer matching criteria. There is a history of doctors using cord blood to treat myelodysplastic syndrome successfully and the doctors at North Carolina Cancer Hospital following Judge Fox’s case were hopeful that this would help him.

Move forward to December 2015, just a few months after the cord blood transplant and Judge Fox is recuperating nicely.  With plans to head back to work in early 2016, he is very grateful to those who have helped him.

 

Judge Fox’s story highlights why we need to provide all expectant parents the option of saving their baby’s cord blood. Collecting cord blood is totally safe in the majority of births and does not hurt the mother or child. However, it is not practiced in every hospital.  This is often due to a lack of funds and sometimes logistics. But, it can also be due to a lack of understanding and awareness of how cord blood is being used today.

Since 1988, there have been more than 30,000 cord blood transplants. “Today, 15% of transplant patients receive cord blood that was generously donated to a public cord blood bank. . .In 2014, 29 % of  cord blood transplants were for minority patients.” (source: Be The Match). Cord blood has been officially recognized to treat 80+ diseases including many blood cancers.

It is a valuable medical resource which should not be thrown away. Whether you donate or privately bank your baby’s cord blood, that is up to you. Both are good options. However, please don’t throw it away. Give life twice. #Savethecord.


 

Save your baby’s cord blood. Find the closest family bank or cord blood donation program near you on our interactive map.  You can also refer to our list of public and private cord blood banks worldwide.

Give life twice. Save the Cord.

Cord blood can be collected in the majority of births.

Regenerative Medicine: Save Lives & Cut Healthcare Costs

Regenerative Medicine: Save Lives & Cut Healthcare Costs

Parents, we have a new buzz word for you. But, this is a wonderful buzz word that could help you. Have you heard about “regenerative medicine”?  Have you heard how this emerging field of medicine has the potential to save lives and cut healthcare costs? Did you know that cord blood stem cells are a critical and non-controversial source of stem cells often used in regenerative medicine? Did you know that people are already receiving these treatments with great success?  It is all true. Let us introduce you to this fascinating world of cellular therapies and regenerative medicine.

Regenerative medicine used to be thought of as “science-fiction” but not anymore. Regenerative medicine is all about repairing damage, rebuilding or building parts of the body.  According to the Centre for Regenerative Medicine in the United Kingdom, regenerative medicines include:

Medical treatments that restore complete function to tissues and organs that are damaged by age, injury or disease. These treatments range from drugs that stimulate tissue regeneration to methods of cell and tissue replacement.(Source:http://www.crm.ed.ac.uk/stem-cells-and-regenerative-medicine/glossary)

As we know, cord blood is a non-controversial source of stem cells.  Because of this and the fact that cord blood is rich in pluripotent stem cells, cord blood has become critical to the emerging field of regenerative medicine.  The AABB Center for Cellular Therapies recently stated:

Cord blood stem cells likely will be an important resource as medicine advances toward harnessing the body’s own cells for treatment. Because a person’s own (autologous) stem cells can be infused back into that individual without being rejected by the body’s immune system, autologous cord blood stem cells have become an increasingly important focus of regenerative medicine research.(Source:http://www.aabb.org/aabbcct/therapyfacts/Pages/regenerative.aspx)

Cord Blood Facts - Non-Controversial Source of Stem Cells

Not only is this amazing science, but it actually has the potential to reduce costs in healthcare systems in the US and around the world. Let’s take diabetes for example. There is great promise using cord blood to cure and/or prevent diabetes. In Australia, the Institute of Endocrinology and Diabetes, The Children’s Hospital at Westmead (Institute) is currently performing clinical trials to determine if cord blood could prevent the onset of juvenile Type 1 diabetes.

For example, if diabetes were to be cured through the permanent or semi-permanent replacement of insulin-producing cells, then the lifetime cost and invasiveness of daily insulin injections would be eliminated.(Source:http://bipartisanpolicy.org/library/advancing-regenerative-cellular-therapy-medical-innovation-for-healthier-americans/)

Another example of the amazing work being done in the field of regenerative medicine is the research led by Dr. James Baumgartner at the Florida Hospital for Children to determine if cord blood could treat perinatal stroke and acquired hearing loss. We recently had the honor of hosting Dr. Baumgartner for a special edition of Share the Science dedicated to this topic (click here to access the webinar).

We also recently spoke with Dr. Curtis Cetrulo, Sr. who spoke to parents about the many new uses for cord blood and the latest research in regenerative medicine using cord blood and perinatal stem cells (watch the video on our YouTube channel).

This type of research represents a real shift in the mindset of physicians and the way we do medicine. . . through cellular therapies and regenerative medicine we go from treating symptoms to actually correcting the problem or even preventing it in the first place. This could potentially improve the quality of life for entire populations and cut healthcare costs dramatically.

Current estimates indicate that approximately 1 in 3 Americans could benefit from regenerative medicine, and children whose cord blood stem cells are available for their own potential use could be among the first to benefit from new therapies as they become available.(Source:http://www.nationalstemcellfoundation.org/cord-blood-stem-cells/)

Advances in regenerative medicine have recently picked up pace. With this progression, it has become clear that new regulations need to be put in place to encourage innovation while keeping people safe.  The decisions we make today will affect generations to come. We need to get it right, the first time.

We were pleased to learn about a recent panel discussion at the Bipartisan Policy Center in Washington, DC which was focused on the need for urgent regulatory reform to make cellular therapies, including regenerative medicine, safe and available to everyone.  Dr. Joanne Kurtzberg from Duke University, Director of Carolinas Cord Blood Bank and CSO of Robertson Clinical and Translational Cell Therapy Program, participated in this discussion.  Her input was vital because she has become a leading expert in using cord blood to help heal the brain.  She has used cord blood to treat cerebral palsy with great success and is undertaking exciting research to use cord blood to treat autism. You can watch the full discussion here:

 

So, parents, where does this leave you?  If you are one of the many parents who donated or privately banked your child’s cord blood at birth, be proud. You gave life twice and your decision could help save the life of a stranger in need or help someone in your own family in need of a cord blood transplant. If you are pregnant and debating what the best choice is for you, please take our advice. . . don’t throw it away.

Should you donate your child’s cord blood or privately bank it?  We consider this question to be a personal choice. Each family is different and has different needs. There are numerous reasons why someone should choose private cord blood banking versus public donation. Equally, there are numerous reasons why public donation makes sense. The world needs both.

Private and public cord blood banks each have their unique benefits. Public banks have access to a large number of donors and can focus on increasing genetic diversity in their donated units. Private banks are in the position to access large amounts of genotypic and phenotypic data that can be correlated with family health histories as well as inform trial design. All of these strengths will be important for advancing clinical trials.(Source: http://www.genengnews.com/insight-and-intelligence/cord-blood-stem-cells/77900564/ )

Parents, to help you through the decision process, start by reading these articles featuring the stories of individuals whose lives have been changed by either using their own cord blood, that of a sibling or that of a stranger.  You will soon see why it is so vital to keep this vital medical resource and through these stories we are sure that you will come to the right conclusion.  Give life twice. Save the cord.

Featured stories:


 

Want to find a public or private cord blood bank near you? Explore your options on our interactive map.

We can also answer some of your frequently asked questions. 

 


Image courtesy of hin255 at FreeDigitalPhotos.net

Dylan Praskins:  Being a Kid. . . Thanks to a Cord Blood Transplant for Leukemia!

Dylan Praskins: Being a Kid. . . Thanks to a Cord Blood Transplant for Leukemia!

If you have been following Save the Cord Foundation for a while then you will remember meeting young Dylan Praskins in a previous article where we introduced this amazing boy shortly after his cord blood transplant for Leukemia.  We recently caught up with Dylan’s parents, Erik and Michelle, to get an update.

Dylan Praskins undergoing chemo prior to a cord blood transplant.

Dylan Praskins undergoing chemo prior to a cord blood transplant.

Born on April 16th, 2009, Dylan was diagnosed with infant leukemia or ALL (Acute Lymphocytic Leukemia) at only 2 months old. The cancer was very aggressive and he was considered high risk because he was younger than 90 days old.  Doctors moved quickly putting Dylan on intense chemo therapy. They also concluded that a cord blood transplant for Leukemia would be the best treatment in his case. On September 11th, 2009, Dylan received the cord blood transplant and as his parents will tell you “it was nothing short of a miracle.”

Move forward to today and Dylan is an active and intelligent 6 year old! His family has documented his progress and their experience post-transplant via a family blog: http://prayfordylan.blogspot.com

dylan praskins cord blood recipient

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

Dylan’s cord blood treatment was very successful. However, battling cancer is never easy and the process can be stressful physically as well as emotionally.

Remembering the day when Dylan was diagnosed, Erik recalled the details, “June 13, 2009…..6pm….”Your son’s white blood cell count is extremely elevated. That can mean one of two things; he may have a tumor of some sort, or he has Leukemia.” I can hear those words as clear in my mind as I heard them over a year ago. Cancer has changed our lives– Leukemia has changed our lives.”

celebrating 6 years old cancer free

Celebrating being 6 years old cancer free with BLUE ice cream!

The family speaks honestly about the difficulties they have been through saying “. . .so much has happened since then. I can remember that day [the day Dylan received his cord blood transplant] as if it were yesterday. We were so anxious, and praying harder than we have ever prayed before.”

Following the transplant, Dylan’s health started to improve rather quickly and he was declared Leukemia free by Christmas.  However, the first major milestone was when Dylan reached the 1-year anniversary of his cord blood transplant for Leukemia and the cancer was still in remission.

A few months ago, Dylan was selected as the “Boy of the Year 2015” for the Leukemia & Lymphoma Society. He and his family talk about their experience now 6 years post-transplant in this informative video which was shared with us by his family.

 

Learn what happened to Dylan next. . . continue reading this article, go to part 2.

 


Are you pregnant? Explore our interactive map to find the best public or private cord blood bank for you.

Cord blood banking Public and Private Options

Cord Blood Banking Options

Cord Blood Banking : Pro-active Parents Needed!

Cord Blood Banking : Pro-active Parents Needed!

Cord Blood Banking : Pro-active Parents Needed!

Dear Parents,

I have bad news. . . being a successful parent is not easy. It starts even before your baby is born and requires you to be pro-active. Being a successful parent has nothing to do with social class, it has to do with caring and standing up for what is right for you and your child. You have to be your child’s voice and ask the right questions, get the right information, connect with the right people who can help you.

Cord blood banking is one of those topics that overwhelms people. Many hospitals are still not connected with the National Public Cord Bank Inventory and so the option of cord blood donation is never brought up during pre-natal visits. In many cases, the issue is simply funding sometimes or the hospital putting priority on other programs. In hospitals where there is no pre-existing program, parents often get shut down when trying to find out more about cord blood. In the worst cases, it is just not even mentioned.

Let’s face it. . . while public donation programs are free for you to donate to they still involve costs to the public system and the logistics involved can be complicated depending on the location of your hospital and their particular partnership at the state level with the national public bank.  In hospitals where public donation is an option there is often a much more pro-active approach by doctors and staff to educate parents about this option and even private banking options.

This week’s Cord Blood Fact of the Week highlights this problem:

Parents must be pro-active for cord blood banking.

Cord Blood Banking: Pro-active Parents Needed

 

The truth is that regardless of where you live (especially in the US) you have lots of cord blood banking options:

If you do nothing, when your baby is born another cord will just be thrown away as medical waste when it could be used to help someone.  That someone could be a stranger thousands of miles away or that someone could be someone in your family.  Today, cord blood stem cells are being used to treat numerous diseases.

Get the facts on cord blood via this short video:

Save the Cord Foundation works with both public and private cord blood banking groups. As a non-commercial and unbiased foundation focused on cord blood education, we don’t endorse any particular private bank over another because we realize that parents have different needs.

However, we do encourage parents to be PRO-ACTIVE about saving their child’s cord blood. Whether you choose to donate or private bank your child’s cord blood, it is certain that you will have to be pro-active about getting the medical team on board, filling out a form or two, making sure you have what you need for the day you give birth (hint: you will need the collection kit!).

Yes, this is one of the most empowering decisions you will make as a parents. It is the first of many to come.  Be prepared to stay on your toes! Congratulations, you are now a successful parent!

Birth is empowering. Let it empower you!

 


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Cord Blood Banking FREE Baby Registry

 

Expecting a baby? REGISTER FOR OUR FREE BABY REGISTRY
Get a free guide to cord blood by registering for our free baby registry.
You will also get a free 1-year subscription to Pregnancy Magazine, free baby shower invitations and access to other offers.

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Thank you to BioInformant for their on-going support for cord blood education. 

Bioinformant - Partner in Cord Blood Education

 

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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