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Suzanne Ferguson @suzannerferguson

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Activity by Suzanne Ferguson @suzannerferguson

suzannerferguson

6 days ago by @suzannerferguson in HLHS · View  

Congratulations to the 2017 IMPACT Winners!

On March 18, the Innovative Minds Partnering to Advance Curative Therapies (IMPACT) program engaged over 200 undergraduate students from 23 different Minnesota colleges. IMPACT is a competitive program open to Minnesota undergraduate students that encourages them to submit hypotheses for different challenges. It is sponsored by Regenerative Medicine Minnesota and the Mayo Clinic Office of Applied Scholarship and Education Science.

This year, teams of students chose one of three challenge topics to answer:

  • What is the underlying cause of hypoplastic left heart syndrome (HLHS)?
  • How do obesity and type 2 diabetes increase the risk of pancreatic cancer?
  • What pedagogical approach should be used in surgical residency programs to improve patient outcomes after inguinal hernia repair?

One winning team from each category was chosen after a day of poster and oral presentations.

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Congratulations to Brian Nguyen, Achai Biong, Vivian Ma, and Kurt Schwieters (University of Minnesota, Rochester) for their winning hypothesis of the HLHS challenge topic. Their hypothesis states, “We hypothesize that intrauterine hypoxia induces the overexpression of microRNA-210, leading to the suppression of Nkx2.5 and fetal cardiac underdevelopment of the left ventricle, resulting in hypoplastic left heart syndrome.”

The winning team members will receive $1,000 along with the opportunity to conduct their research at Mayo Clinic for the summer. Congratulations to the first place winners!

IMPACT was launched in the spring of 2014 and has continued to expand each year, reaching over 500 Minnesota undergraduates to date. By engaging undergraduate students with a spirit for innovation, this initiative will continue to forge collaborations toward the common goal of advancing the health and well-being of patients. For more information on the IMPACT program or how you can participate, please contact Katie Campbell, IMPACT Program Director, at 507-284-0820 or email her at IMPACT@mayo.edu.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

 

 

 

 

 

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suzannerferguson

Mon, Apr 10 at 9:52am CDT by @suzannerferguson in HLHS · View  

Dr. Nelson featured on "Heart to Heart with Anna"

Dr. Nelson was recently featured on the radio show “Heart to Heart with Anna” to discuss the work our program is doing to delay and prevent heart failure for individuals with HLHS. Dr. Nelson and Anna discuss the clinical trial using umbilical cord blood as well as the clinical trial using bone marrow cells. Listen today!

For any questions regarding the use of stem cells or to learn more about the work here at Mayo Clinic’s Todd and Karen Wanek Family Program for HLHS, email us at HLHS@mayo.edu.

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The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

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suzannerferguson

Mon, Mar 13 at 9:14am CDT by @suzannerferguson in HLHS · View  

Mayo Clinic to host undergraduate students at IMPACT Symposium on March 18

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The Innovative Minds Partnering to Advance Curative Therapies (IMPACT) Program at Mayo Clinic will hold their fourth annual IMPACT Symposium this Saturday, March 18 from 9:00 a.m. until 5:00 p.m. at Mayo Clinic in Rochester, Minnesota. The IMPACT Symposium is a daylong conference for students to pitch their innovative hypotheses to critical Mayo research questions. The event includes poster presentations, oral presentations by top student teams, and keynote presentations highlighting advances in Regenerative Medicine, Individualized Medicine, and Surgical Education. This year, students from 30 Minnesota state, private, and community colleges will participate in the IMPACT program.

The IMPACT program is a crowdsourcing competition that engages Minnesota undergraduate students. Undergraduate student teams were challenged this year to develop innovative hypotheses to the following challenge questions:

  1. What is the underlying cause of hypoplastic left heart syndrome (HLHS)?
  2. How do obesity and type 2 diabetes increase the risk of pancreatic cancer?
  3. What pedagogical approach should be used in surgical residency programs to improve patient outcomes after inguinal hernia repair?

To date, a total of 522 students have participated in the IMPACT program over the past 4 years. This year, 72 teams, including 238 students, worked on the IMPACT challenge questions from November to February and will pitch their novel ideas at the IMPACT Symposium. The teams who win the IMPACT competition will receive $1000 per student and a paid summer internship to do research related to their IMPACT topic here at Mayo Clinic.

For more information, please visit the IMPACT website or contact Katie Campbell, PhD, IMPACT Program Director, at IMPACT@mayo.edu.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

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suzannerferguson

Hi, @christinekelly. This current study requires the umbilical cord blood to be processed in a specific manner to create highly concentrated stem cells so the option of transferring it would not be possible. That being said, there’s always the possibility that this could change in the future. Please don't hesitate to email us at HLHS@mayo.edu if you'd like to discuss this in more detail. Thanks!

suzannerferguson

Great question @slocano. At this time, the study we have open requires the umbilical cord blood to be processed in a specific manner to create highly concentrated stem cells so the option of transferring it would not be possible. That being said, there’s always the possibility that this could change in the future. If you have any other questions, please don't hesitate to email us at HLHS@mayo.edu. Thanks!

suzannerferguson

Tue, Feb 21 at 8:04am CDT by @suzannerferguson in HLHS · View  

HLHS Program is now able to collect and store umbilical cord blood

Here at the Todd and Karen Wanek Family Program for HLHS we are excited to announce that we are now able to collect, process, and store umbilical cord blood (UCB) from HLHS babies to be potentially used for clinical trials in the future.

After a baby is born and the umbilical cord is cut, the leftover blood that remains in the blood vessels of the placenta and in the portion of the umbilical cord attached to it is known as UCB. The blood from a newborn’s umbilical cord must be collected immediately after delivery and can be preserved privately,  donated for public use, or preserved for a specific purpose, depending on a family’s wishes.

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Our program has a clinical trial aimed at strengthening the heart using autologous stem cells, or stem cells collected from an individual’s own body. Once the UCB cells have been collected, they are processed and can then be injected back into the body during the Glenn procedure. To learn more about the clinical trial, watch the video below or contact us at HLHS@mayo.edu.

 

 


 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Contact the program at HLHS@mayo.edu.

christinekelly

christinekelly responded Fri, Feb 24 at 9:10pm CDT · View

My son is 9 years old with HLHS, he was born with Critical Airtic Stenosis and we did save his cord blood at birth and would love more information on the subject.

suzannerferguson

Suzanne Ferguson responded Mon, Feb 27 at 2:13pm CDT · View

Hi, @christinekelly. This current study requires the umbilical cord blood to be processed in a specific manner to create highly concentrated stem cells so the option of transferring it would not be possible. That being said, there’s always the possibility that this could change in the future. Please don't hesitate to email us at HLHS@mayo.edu if you'd like to discuss this in more detail. Thanks!

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suzannerferguson

@ryanrubeck, Please accept our sincerest apologies for the wording. The post was corrected. Our program works very hard every day in honor of Roman's memory. Thank you for bringing this to our attention.

suzannerferguson

Mon, Feb 13 at 12:42pm CDT by @suzannerferguson in HLHS · View  

Mayo Clinic, Children’s Hospital of Philadelphia announce rare congenital heart defect collaboration

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ROCHESTER, Minn. and PHILADELPHIA — Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome and Children’s Hospital of Philadelphia are collaborating to delay and prevent heart failure for hypoplastic left heart syndrome, a rare and complex form of congenital heart disease in which the left side of a child's heart is severely underdeveloped.

“We are very excited to be working with Children’s Hospital of Philadelphia to explore better treatment options for patients with hypoplastic left heart syndrome,” says Timothy Nelson, M.D., Ph.D., director, Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome. “By entering into this collaboration, we are making it possible for all children with hypoplastic left heart syndrome to be able to participate in cell-based treatments, no matter their location. This new hypoplastic left heart syndrome consortium significantly expands the reach of hypoplastic left heart syndrome research.”

“Children’s Hospital of Philadelphia has a long-standing history of caring for children with hypoplastic left heart syndrome, and this exciting collaboration with Mayo Clinic offers promising opportunities to develop new ways to give patients an even better quality of life,” says Robert Shaddy, M.D., chief of Cardiology, Children’s Hospital of Philadelphia. “Lifesaving palliative surgery reroutes a child’s blood flow, but patients may have significant health problems, as they grow up with a unique circulation. Cell-based therapy offers us another potential option – beyond conventional medical treatments, ventricular assist devices or transplants – for a child or young adult with a failing heart.”

MEDIA CONTACTS:
Suzanne Ferguson, Mayo Clinic Public Affairs, 507-284-5005, 
newsbureau@mayo.edu

Joey McCool Ryan, Children’s Hospital of Philadelphia Public Relations, 267-426-6070, mccool@emailchop.edu

The collaboration is part of a consortium across the nation and will allow for a decrease in the amount of time from research and discovery to the clinical application of innovative cell-based therapies.

The consortium aligns regional centers into a nationwide collaboration led by the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome at Mayo Clinic to accelerate innovation on hypoplastic left heart syndrome, discovery sciences, and clinical expertise by investing local resources back into research. The program seeks to work with five to seven regional centers across the U.S. to fund the development of cell-based innovative research opportunities to transform the lives of people living with hypoplastic left heart syndrome.

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Read the rest of the announcement on the Mayo Clinic News Network.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Contact the program at HLHS@mayo.edu.

 

 

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suzannerferguson

Tue, Feb 7 at 8:00am CDT by @suzannerferguson in HLHS · View  

CHD Awareness Week February 7-14

Congenital Heart Defect (CHD) Awareness Week starts today and goes through the 14th of February.

CHD Awareness Week is a special week dedicated to raising awareness and support for individuals with CHDs. In honor of the week, our program will be sharing information on social media about research findings, helpful tools and information as well as inspirational stories. A new post will be highlighted each day so make sure to head on over to Facebook (Mayo Clinic HLHS), Twitter (@mayoclinicHLHS) or Instagram (@mayoclinichlhs) to follow along.

We also have very exciting news that we will be announcing during CHD Awareness Week so stay tuned!

 

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The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Contact the program at HLHS@mayo.edu.

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suzannerferguson

Wed, Feb 1 at 8:35am CDT by @suzannerferguson in HLHS · View  

#AsktheMayoMom Facebook Live Tomorrow at 10 am CT

Join us tomorrow at 10 am CT for an #AsktheMayoMom Facebook Live session about hypoplastic left heart syndrome (HLHS) with Dr. Angela Mattke, pediatrician, and Dr. Timothy Nelson, pediatric cardiologist and director of the Todd and Karen Wanek Family Program for HLHS.

http://mayocl.in/2jVbQu0

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The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Contact the program at HLHS@mayo.edu.

 

 

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suzannerferguson

Nov 29, 2016 by @suzannerferguson in HLHS · View  

HLHS Health Journal – New App to Keep Track of Health

hlhs-health-journal-facebook The Todd and Karen Wanek Family Program is excited to announce a new collaboration with Sisters by Heart and Empatheia to provide the HLHS Health Journal, a new app for individuals and families to help keep track of important daily vitals and improve clinical care.

HLHS Health Journal makes it easier for individuals and parents to keep track of health information including heart rate, nutrition, medication, body weight, and oximetry levels and even provides the ability to take photographs and capture videos. The app provides a unique opportunity to collect, monitor and share information with medical care teams by email and to voluntarily participate in research studies to improve the overall care of patients. By sharing daily HLHS Health Journal entries, individuals are leading the transformation of the future for HLHS by helping to develop standards of care for all HLHS patients. When doctors and researchers know more about the daily lives of all HLHS patients, they can provide them with better treatment options in the future.

HLHS Health Journal can be downloaded to an iPhone through the App Store. While currently only available on an iPhone, the Android version will be coming in the near future. Life beyond the surgeries should not be a guessing game. Lead the transformation of the future - one HLHS Health Journal entry at a time. *Mayo Clinic has a financial interest in Empatheia.


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Contact the program at HLHS@mayo.edu.

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suzannerferguson

Sep 9, 2016 by @suzannerferguson in HLHS · View  

What you need to know about umbilical cord blood banking

We recently sat down with Susana Cantero Peral, M.D., Ph.D., and cord blood expert here at the Todd and Karen Wanek Family Program for HLHS. She provided some insight into the whole process of umbilical cord blood banking and how the cell-rich umbilical cord blood can possibly be used in the future to treat diseases.

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Q: What is umbilical cord blood (UCB)?

A: After a baby is born and the umbilical cord is cut, the leftover blood that remains in the blood vessels of the placenta and in the portion of the umbilical cord attached to it, is known as umbilical cord blood (UCB). After birth, the baby no longer needs this extra blood.

UCB contains all of the normal elements of blood – red cells, white cells, platelets, and plasma. It is also rich in hematopoietic (blood-forming) stem cells, similar to the stem cells found in bone marrow. Because of that fact, UCB can be used to treat a number of different disorders including being used for bone marrow transplantation. So far, UCB has been used to treat more than 80 different diseases, with the most common being leukemia. Patients with other blood diseases (such as myelodysplasia, severe aplastic anemia, and lymphoma), inherited diseases of red blood cells, immune system diseases, and metabolic diseases have also been successfully transplanted with UCB. Most transplants have been performed using unrelated UCB units donated to public banks.

As of August 2016, an estimated 698,609 cord blood units have been stored (1) and nearly 40,000 UCB transplants have been performed worldwide since 1988 (2). Now, more UCB transplants have been carried out than bone marrow transplants.

Q: How can UCB be preserved, and how long can it last in order to retain its properties?

A: The blood from a newborn’s umbilical cord must be collected immediately after delivery and either preserved privately or publically for possible future use or for research. This process is known as UCB banking. Stored properly, UCB can last indefinitely.

Q: Where can I bank my baby’s UCB?

A: There are a few options to bank UCB.

Public banks: By donating your newborn’s UCB to a public bank, you make it possible for public use by an individual struggling with a disease or for research. This donation could help someone who needs a hematopoietic stem cell transplant. To find out more information, speak to your doctor.

Private banks: This is an option for parents who wish to preserve their newborn’s UCB for possible individual or familial use in the future. There are numerous private cord blood banks that charge a fee to collect and store UCB for private use. All of them have information available on their websites and can be contacted via the internet or phone for more information. Another way to access a private cord blood bank is through your OB/GYN. Parents will receive the UCB collection kit with instructions before the delivery and are responsible for bringing to kit with them at the time of delivery. Usually, once the baby is born, the company takes care of the logistics of the transport from the birth center to its laboratory.

Directed banks: These banks are intended for a specific purpose. The Todd and Karen Wanek Family Program for HLHS is one example of a directed bank. The program collects, processes and stores UCB from HLHS babies to be potentially used for regenerative purposes in the future. To learn more, contact the program at HLHS@mayo.edu.

Q: Who can use UCB if it is privately banked?

A: If UCB is privately banked, it could be used by the individual whose cord blood it is (known as autologous) or by a member of the donor’s family but most likely a sibling (known as allogeneic). There is up to a 25% probability of a perfect human leukocyte antigen (HLA) match with siblings. (HLA is a protein used to match donors for a transplant.)

Q: If I donated my child’s UCB to a public bank, can I access it if my child or family member needs it and it hasn’t been used yet?

A: Yes, you can access your child’s UCB if you need it; however, the chances of it being available decrease over time.

Q: Is publically banked UCB stored the same way as privately banked UCB?

A: Private UCB banks should meet the same standards, quality control, and accreditation requirements as those required for public UCB banks. However, the standards for public UCB banking and private UCB banking may differ in terms of maternal eligibility and nucleated cell count requirements. These factors may influence the overall quality of the stored UCB. The long-term viability of privately banked UCB cells is a concern as the UCB cells collected at birth may not be used forever. So far, UCB has been studied to be viable for up to 23 years after cryopreservation (3).

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Q: Does UCB contain any other “special” cells or properties?

A: In addition to its use as an alternative to bone marrow for stem cell transplantation, UCB has recently been used in a variety of regenerative medicine applications. Some researchers have shown that UCB contains a mixture of stem cells capable of giving rise to any cell of the body.

Q: What do critics say about UCB?

A: UCB is widely used in transplant medicine as an alternative source of bone marrow hematopoietic stem cells since 1988. At that time, the potential for these cells was not known, and some hematologists and transplant physicians regarded the new source of stem cells as “science fiction.” Today it a proven treatment. In regards to UCB usefulness in the regenerative medicine field, although the use of non-hematopoietic and hematopoietic stem cells remains speculative, wide-ranging research efforts are underway worldwide.

Q: What do you think are the biggest misunderstandings about banking UCB?

A: Many people think that every UCB unit collected can be used for clinical purposes, and unfortunately, a high portion of these cord blood units do not meet the criteria to be kept for further use. In those cases, the UCB units are discarded or used for research purposes.

Regarding private UCB banking, many parents considering banking have been informed of the remote likelihood that UCB will be used for the donor child or another family member. It should, however, be noted that these considerations are based on current hematologic indications without taking into account the potential use of UCB in non-hematologic diseases. Several studies are exploring the possibility of treating infants with different conditions using autologous UCB. If current clinical trials are successful, UCB banking used for self or family members may become more and more cost efficient as new indications appear.

  1. Bone Marrow Donors Worldwide. Available at:bmdw.org. Accessed August 26, 2016.
  2. Ballen KK, Gluckman E, Broxmeyer HE. Umbilical cord blood transplantation: the first 25 years and beyond. Blood 2013;122(4):491-498.
  3. BroxmeyerHE, Lee MR, Hangoc G, Cooper S, Prasain N, Kim YJ, Mallett C, Ye Z, Witting S, Cornetta K, Cheng L, Yoder MC. Hematopoietic stem/progenitor cells, generation of induced pluripotent stem cells, and isolation of endothelial progenitors from 21- to 23.5-year cryopreserved cord blood. Blood. 2011 May 5;117 (18):4773-4777.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

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suzannerferguson

Jul 21, 2016 by @suzannerferguson in HLHS · View  

New Clinical Trial Using Bone Marrow Stem Cells

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is excited to announce a new clinical trial for children and adults with single right ventricles. This clinical trial uses stem cells obtained from a person’s bone marrow and delivers them into the heart muscle to hopefully make the heart grow stronger for years to come.

People who have undergone the Fontan procedure for HLHS or other congenital heart diseases with single right ventricles, such as double outlet right ventricle, unbalanced atrioventricular canal defect or others, may develop a weakening heart muscle with age and may need to decide how to manage emerging heart problems. Regenerative medicine and cell therapy may offer options that could delay or even prevent heart failure by using stem cells from within one’s own body.

Find out more about the trial from the video below.

If you are interested in participating in the clinical trial or would like more information, please email HLHS@mayo.edu.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

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suzannerferguson

Jun 29, 2016 by @suzannerferguson in HLHS · View  

Genetics of Hypoplastic Left Heart Syndrome

Doctors D. Woodrow Benson from the Medical College of Wisconsin, Milwaukee, Lisa J. Martin from Cincinnati Children's Hospital Medical Center, and Cecilia W. Lo from the University of Pittsburgh School of Medicine recently published a paper on the genetics of hypoplastic left heart syndrome (HLHS). We asked one of our genetic researchers, Dr. Jeanne Theis, to give us an overall idea of what this paper means for those in the congenital heart disease (CHD) world. HLHS heart blocks labelled

Genetics of HLHS

HLHS is described as being a complex trait which means that the genetic cause is complicated. There are many factors that may be involved and, in order to fully understand the genetics, we have to take into account each one of them. Three terms commonly used to describe the genetics of HLHS are: genetically heterogeneous, variable expressivity and reduced penetrance. So what do we currently understand about the genetics of HLHS and how can we use this knowledge to help us understand more?

genetics-words-2 At this point in time, we know that HLHS is genetically heterogeneous. In other words, there isn’t a single gene that is associated with HLHS. There are many unique genes that are important during heart development and it is possible that a genetic variant in any one of those genes would be enough to lead to HLHS. While specific genes have been found to be linked to HLHS, they are identified in a very small subset of individuals.

Variable expressivity is a second term that is often used when describing HLHS. This means that the same genetic variant may cause many different types of congenital heart disease (CHD), including HLHS. While it is uncommon to have two family members with HLHS, multiple papers have been published discussing a strong familial clustering of HLHS with other CHDs. Recently, Dr. Angela Kelle published a study in the American Journal of Cardiology which found when studying family members of 52 patients with HLHS, 11% were found to have a CHD. While the CHDs are typically not as severe as HLHS from a developmental perspective, it makes sense that they may be linked at the level of the specific genetic variant. The big question as to why a single genetic variant may cause HLHS in one patient and a bicuspid aortic valve in their sibling is unknown and may be due to other genetic variants or possible environmental factors.

Reduced penetrance is a perplexing factor in the world of human genetics. This suggests that one family member may carry the same variant that is thought to cause HLHS in another family member, but that individual appears to have no CHD himself. While there may be a variant that drives HLHS during the early stages of heart development, there are likely other factors involved in the occurrence of this complex trait.

In an effort to take into account all of these factors, our program sequences the entire genome of all study participants (individuals with HLHS, mothers, fathers, siblings and any additional family members known to have a CHD). With this approach, we are able to analyze the millions of variants in each individual’s genetic blueprint and are not required to focus on a specific subset of genes. While we do look for rare variants in genes among individuals with HLHS, we also focus on the genomic sequence of each family unit. If we know that a mother has a bicuspid aortic valve, we will look at those variants that she shares with her child who has HLHS. The sequencing and annotation of variants within a genome is no longer the limiting step it was in the past. Our current challenge is to identify the one, two or five variants that are important for HLHS from the millions of variants within a single genome.

For questions related to our research or how to get involved, please contact our program at HLHS@mayo.edu.


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

 

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suzannerferguson

Jun 24, 2016 by @suzannerferguson in HLHS · View  

Mayo Researchers Use Stem Cells to Try and Heal Baby Lucas’ Heart

We recently highlighted Lucas Gutman’s story on our social media outlets, but his story was also featured in a Mayo publication called In the Loop. Check out how Lucas became a participant in the clinical trial that injected his own umbilical cord stem cells into the right side of his heart.

__________________ GutmanLucas805Last July, Jennifer Gutman told Toledo, Ohio’s 13abc Action News that the day doctors diagnosed her unborn son, Lucas, with hypoplastic left heart syndrome, also known as HLHS, was “the worst day of her life.” The diagnosis came during what Jennifer and her husband, Brian, thought would be a routine 22-week ultrasound. The startling news conjured up immediate fears for Lucas’ future, and painful memories for Jennifer. “My brother was also born with HLHS,” she tells us. “He passed away as an infant.”

Determined to not let Lucas meet that same fate, Jennifer’s sister-in-law, a physician, began reaching out to colleagues for advice. This led her to Timothy Nelson, M.D., Ph.D., a physician at Mayo’s Rochester campus. Dr. Nelson is the lead researcher on a clinical trial that aims to determine whether regenerative therapies like stem cell injections can “strengthen” the right side of the heart of HLHS patients enough to “delay — or even prevent — the need for heart transplants” later in life, according to MayoClinic.org.

Read the rest of the story on In the Loop.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. To contact the program, email HLHS@mayo.edu.

suzannerferguson

Suzanne Ferguson responded Tue, Feb 14 at 6:59pm CDT · View

@ryanrubeck, Please accept our sincerest apologies for the wording. The post was corrected. Our program works very hard every day in honor of Roman's memory. Thank you for bringing this to our attention.

nelson01

nelson01 responded Wed, Feb 15 at 8:34am CDT · View

@ryanrubeck Ryan- Thank you for sharing your personal story here in response to our story. I am so sorry that we implied that Roman was forgotten within our Program. Your pioneering spirit from the beginning indeed paved the way for all future kids. Roman is our inspiration and motivation every single day in the program. The HLHS Program is forever grateful for the families that continue to follow your lead. Thank you for sharing Roman's [...]

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suzannerferguson

Jan 27, 2016 by @suzannerferguson in HLHS · View  

How Studying Genes Helps Us to Understand HLHS

Here at the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS), we are working on new ways to delay and prevent heart failure for people with congenital heart defects. In order to do that, we are studying regenerative (stem cells) therapies, genetics and imaging techniques along with creating the world's largest biorepository for patients with HLHS and their families.

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To better understand the major role that genetics plays in the work we are doing, check out the short video below.

Do you have questions or are you interested in our program? Email us at HLHS@mayo.edu.

 


 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

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