Newsletter - September 2015
Interview with Matt Farrow, Recipient of World's 1st Cord Blood Transplant
Matthew Farrow, then a 5 year old boy with Fanconi anemia, received the world's first cord blood transplant on 6 Oct. 1988. The pioneering medical event was an international effort: Matthew came from North Carolina USA, his donor was his newborn baby sister, the American scientist who stored the cord blood was Dr. Hal Broxmeyer, and the transplant was performed at the French Hôpital Saint-Louis in Paris, where his physician was Dr. Eliane Gluckman. Matt is now 32 years old, married, and a father.
Matt, why do you do public outreach?
My goal is to share my story to help increase awareness and understanding of cord blood. There are so many people who don't really know the importance of it.
From your own experiences talking to patients and their families, what do you think are the key things that they should know about cord blood transplants?
I mostly talk to families with Fanconi Anemia (FA) because that is my diagnosis. My little sister's cord blood cured me from bone marrow failure caused by FA and that allowed me to grow up and become an adult. I encourage families of young kids who have gone through transplants, and show them that patients can grow up, have a family, and live a normal life.
Matt, you now work for CORD:USE, a hybrid public/private cord blood bank that is directed by some of the leading doctors in cord blood transplantation. Can you tell us a bit about your work?
It is an honor to be able to work with a company that is led by the pioneers in this field. These doctors played a huge part in my life. I work as a patient advocate and I am able to go to public events and hospitals to share from my patient perspective the importance of cord blood. When I am not traveling, I work in the corporate office where I assist with the day to day operations of the cord blood bank. I do a lot of inventory management and warehouse upkeep. I do all of the ordering, for example I order all the supplies that go into the cord blood collection kits, both for collecting public donations and for family banking.
As a spokesperson for cord blood awareness, you have traveled to medical conferences, testified to politicians, and appeared at public events like NASCAR races. What was the most exciting experience you have had as a spokesperson?
I love doing these events, but my most exciting experience would have to be meeting kids that have had a cord blood transplant, like Rachel who inspired the name of the blog I just started, The Mr Matt. Rachel Lynn Smith was a patient of Dr. Kurtzberg's who had a cord blood transplant for Blackfan-Diamond Anemia. Rachel's parents formed a Foundation in her memory called COW Houses. Children like Rachel inspire me to keep going and the people that I meet touch my heart.
Even though you are a celebrity in the cord blood community, the day to day reality is that you are a regular guy trying to make ends meet and raise a family. Do you have any advice for transplant survivors trying to find a "new normal"?
I've been very blessed that I havn't had long-term side effects from my cord blood transplant. Since I was so young when I had my transplant, living with that is all I ever knew. I was just a kid that wanted to play and get dirty and be like the other kids. After my transplant it took me a while to learn that it was OK to get dirty. So my advice would have to be that it is going to take time to adjust and to not dwell on the bad parts of the process. It is easy to ask "Oh, why me?" and I am sad that many of my friends have passed away. It took me a much longer time to realize that I had to focus on the future and really start living. G-d kept me here for a reason.
Matt, you appeared in a movie, Celebrating a Second Chance at Life - The history of Blood and Marrow Transplantation, that was produced by the patient support organization BMTinfonet. The movie featured some footage of you as a 5 year old in the hospital in Paris (minute 15). What do you tell your own son Elijah about those experiences?
Elijah will be twelve this November. We talk all the time about what I had to go through, how the transplant process was different from the way it is now, and I share with him little stories of the things that I can remember. For example I had to stay inside a plastic bubble and I could not have contact with anyone. I had to be sick by myself when all I wanted was to be held by my mom. When my parents came into the room they had to be completely gowned up. Even today, patients are in rooms with posiive air pressure instead of being inside bubbles, but parents still have to gown up and wear gloves and there is always a barrier when they touch their children.
Elijah is very proud of me and very proud to share who I am and how many lives have been saved because of his dad's experience as the first patient.
Many people still are not very aware or informed about cord blood stem cells and banking options. What do you think the cord blood community should do about this?
I think there should be a stronger message educating the public on the truth about cord blood and cord blood stem cells. I feel there is too much negative energy in the media about embryonic stem cells and the public is not hearing enough about cord blood stem cells. This leaves an impression in people's minds that stem cells are a negative thing. I was in a fast food restaurant one day and I overheard one customer tell another that cord blood banking is all a scam, so I went over and introduced myself. We need to get out more positive messages about cord blood stem cells.
I wish we had a TV presence in the cord blood field. We should have public service commercials about cord blood banking.
I think a lot of doctors don't explain cord blood options to expectant parents as well as they could, so better education for doctors would be helpful.
Childhood Cancer Awareness Month
Brett Wilson, 2 time childhood cancer survivor & founder of Walking Miracles
As a two time survivor of childhood cancer and founder of Walking Miracles charity, I have always been amazed at the lack of attention paid to families who have experienced childhood cancer.
Childhood Cancer Awareness? What does it mean? There is not one commercial on TV during September letting us know that it is Childhood Cancer Awareness Month. There are no ribbons on billboards or buildings. We do see commercials that pull at the heartstrings with kids and celebrities, asking us to give to hospitals. We give to research, but does that pay for families to get to and from treatments, and does it replace lost income? No.
Every day children and families receive a diagnosis of childhood cancer. They are fighting and overcoming odds that no one should have to fight as a child. These kids take chemotherapy (poison in their little bodies) and radiation (high energy particles that are used to kill cancer cells). Kids with leukemia are on these drugs for a minimum of 3 years, 5 days a week. These children's lives are turned upside down and their childhoods are lost due to something they never asked for.
Children with cancer look different. They may be bullied and ostracized by other children because of ignorance. They are given extra attention by families and teachers. These families, if they are not educated, may not realize that treatment for childhood cancer can cause a lifetime of side effects. This will lead to more bills for the family, but what do the children feel? They feel frustration, anger, sadness, and lonely.
Where I live in rural West Virginia, families who have a child with cancer must drive 2 to 3 hours one way for treatment 5 days a week. They may spend over a third of their income on gas, food, and lodging in pursuit of therapy. Once a child is diagnosed with cancer, a family can go from two incomes to one like the snap of a finger. The bills and the stress mount up.
What if your child was diagnosed with cancer? Wouldn't you want to learn from someone who has been through that minefield before? Wouldn't you want a navigator and mental health counselor and someone to guide you? That is why Walking Miracles exists.
Walking Miracles was formed to empower childhood cancer families and survivors in rural West Virginia so we can walk with them through the journey and educate them along the way. We will provide support in recovery or in relapse.
Are there non-profits like ours in your area? Do you know where you would go for help? If not, take a chance and learn more about us. Maybe if we all work together we can help you too. Visit our web site WalkingMiracles.org
Celebrating the Anniversary of the
1st Cord Blood Transplant
Del Steckler, RN, BSN, MMA, Manager Cord Blood Recruitment at Be The Match® operated by National Marrow Donor Program
October is the anniversary of the first umbilical cord blood transplant and it marks an important opportunity to increase understanding among expectant parents and the public about cord blood options.
For many years, Parent's Guide to Cord Blood Foundation has worked closely with the National Marrow Donor Program® (NMDP/Be The Match®), a nonprofit organization that manages the largest and most diverse registry of potential adult marrow donors and publicly donated cord blood units in the world. The collaboration exists to raise awareness of cord blood options in the hopes of encouraging more expectant parents to take advantage of the potential of this incredible source of blood stem cells.
NMDP/Be The Match® is the U.S. hub of a global transplant network that connects more than 600 leading transplant centers worldwide. All centers in the network must meet the quality standards of NMDP/Be The Match®. These standards are put in place to make sure that donors and patients receive high quality care and that government standards are met.
In 2005, the NMDP/Be The Match® was selected by the U.S. government to serve as the nation's Cord Blood Coordinating Center. NMDP/Be The Match® works with public cord blood banks, physicians and researchers to continually improve cord blood transplantation and educate medical professionals and the public.
The need for increased awareness among the public is great. Every year, countless mothers experience the miracle of life when they bring their newborns into the world. However, many are not aware that they can provide a miracle for others as well.
It is important for expectant mothers to know that there is no cost to donate to a public cord bank, and donation is safe for the mother and the baby. Cord blood is collected from the umbilical cord immediately after birth and does not affect the labor or delivery in any way. Following the donation, the cord blood is tested, frozen and stored as a cord blood unit at a public cord blood bank for future use.
Donated cord blood that meets the requirements can be listed on the Be The Match® Registry and made available to any searching patient who needs a blood stem cell transplant.
Needs and Challenges
As many in the medical community are aware, publicly donated cord blood can now be a potentially life-saving treatment option for patients battling one of more than 70 different diseases, including blood cancers, sickle cell disease and many other life-threatening illnesses.
But despite its potential, most cord blood is discarded, because of lack of awareness about the option to donate cord blood. More donations are needed, so that more patients can get the transplant they need.
The most urgent need among public cord blood banks is donated cord blood from babies whose parents are of diverse ethnic and racial backgrounds. Patients are more likely to find a match with cord blood units from someone who shares their ethnicity. Overall, there are fewer numbers of cord blood units from diverse populations on the Be The Match® Registry, making it more difficult for minority patients to find a match.
Quality collection is critical. A large percent of publicly donated cord blood units are not able to be stored for transplantation. Cord blood units collected for public donation follow strict quality standards to provide the best possible result for transplant patients. It is important that the cord blood unit contains enough blood-forming cells for a successful transplant. If there are too few cells, the cord blood unit cannot be listed on the registry.
While organizations like the NMDP/Be The Match® and Parent's Guide to Cord Blood Foundation are raising awareness about the need for donated cord blood units, donation is not available in every state due to the high costs of opening a cord blood bank and collecting and storing cord blood units. To ensure that patients have an acceptably matched cord blood unit on the registry, additional financial resources are needed to increase opportunities for donation, collection and storage of cord blood units.
Despite the challenges, more than 622,000 units are now available worldwide through the Be The Match® Registry and our international network partners, and most patients (81-99%, depending on race or ethnicity) are able to find a matching cord blood unit on the Be The Match® Registry. This is great progress, but there is more to be done, because we are still not able to provide a matching cord blood unit for every patient in need of a transplant.
For more information about the NMDP/Be The Match® and cord blood donation, visit BeTheMatch.org/cord.