HLHS Cause to Cure

Hypoplastic Left Heart Syndrome Program from Mayo Clinic

Posts (81)

Jan 24, 2017 · Using Regenerative Medicine to Find Answers for Hypoplastic Left Heart Syndrome

The goal of the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is to discover how regenerative medicine, also known as the use of stem cells, can make HLHS hearts bigger, better and stronger in order to delay or even prevent heart failure. In the video below, Dr. Timothy Nelson, director, discusses the HLHS program including a clinical trial for HLHS patients in which umbilical cord blood is collected at birth, processed, and delivered into the heart muscle during one of the patient’s surgeries.

To learn more, contact the program 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. Contact the program at HLHS@mayo.edu.

 

Dec 28, 2016 · Helping the HLHS Heart Grow Stronger

Hi @leannehlhsmum, @lorraineh and @ellenmarie. Please send us an email at HLHS@mayo.edu. We will be happy to discuss everything in more detail. Thanks!

Dec 21, 2016 · Helping the HLHS Heart Grow Stronger

Hi @kepcox76 and @char2878. Send us an email at HLHS@mayo.edu and we will be happy to discuss everything in more detail!

Dec 20, 2016 · Helping the HLHS Heart Grow Stronger

Our main goal at the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome(HLHS) is to delay and prevent heart failure for individuals with HLHS. The video below discusses how we are using stem cells to grow the heart stronger.

 

 

For any questions, please 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.

Nov 29, 2016 · 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.

Nov 23, 2016 · HLHS Pullovers

*Update: We have received many requests to reopen the ordering for the pullovers. Please see the information below.*

We received quite a few requests regarding our HLHS pullovers so we have now made them available for purchase. Make sure to place your orders by December 9!

hlhs-pullover

 

To order pullover shirts:

  • Enter the site: http://mayohlhs.idworks.com/
  • Under Create an Account, click “Register”.
  • Enter your name, email address, and choose a password. Check the box and click “Register”.
  • Choose the shirt and size and add it to your cart. Note the sizing chart available on the page as all sales are final.
  • Fill in the billing/shipping address box. It will be shipped directly to you. A flat rate of $8.99 will be applied.
  • All orders must be placed by Midnight on Friday, December 9 Central Time.
  • For questions regarding the website, contact Identity Works Customer Service at MayoClinicCS@idworks.com.

 

*Please note that no proceeds from the sale of these pullovers go to the HLHS Program.

————————————————————————————————————————————
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.

Nov 23, 2016 · HLHS Pullovers

*Update: We have received many requests to reopen the ordering for the pullovers. Please see the information below.*

We received quite a few requests regarding our HLHS pullovers so we have now made them available for purchase. Make sure to place your orders by December 9!

hlhs-pullover

 

To order pullover shirts:

  • Enter the site: http://mayohlhs.idworks.com/
  • Under Create an Account, click “Register”.
  • Enter your name, email address, and choose a password. Check the box and click “Register”.
  • Choose the shirt and size and add it to your cart. Note the sizing chart available on the page as all sales are final.
  • Fill in the billing/shipping address box.  It will be shipped directly to you.  A flat rate of $8.99 will be applied.
  • All orders must be placed by Midnight on Friday, December 9 Central Time.
  • For questions regarding the website, contact Identity Works Customer Service at MayoClinicCS@idworks.com.

 

*Please note that no proceeds from the sale of these pullovers go to the HLHS Program.

————————————————————————————————————————————
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.

Nov 16, 2016 · HLHS Survivors Come Together in Annual Celebration of Life

brentonwedding805

Once upon a time, “happily ever after” wasn’t a phrase associated with hypoplastic left heart syndrome, or HLHS. For many years, parents were simply advised to make the most of their brief time with children born with the rare heart defect. That’s one of the reasons the annual “Feel the Beat” event at Mayo Clinic’s Rochester campus is such a celebration. The event is sponsored by the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome and, as KTTC-TV reports, is about “bringing together people” living with HLHS to share their experiences while learning how research and treatments continue to evolve. This year’s event brought together roughly 200 people from 15 different states.

The event was especially poignant for newlywed Brenton Ball. Brenton’s HLHS initially went undetected by doctors. A week after his birth, symptoms started to materialize. “He had reflux of the stomach, so he was continually vomiting,” Brenton’s mom, Heidi, says. “I just kept thinking something else was wrong, though, so I called our local hospital three times that night.”

The next morning she called to tell Brenton’s pediatrician they were coming in. When they arrived at the clinic, Heidi tells us the doctor walked in, took one look at Brenton, and immediately walked out of the room. “They called the local hospital, put a chopper in the air, and put oxygen on him,” she says. “He was clearly blue by then.”

At the hospital, surgeons repaired Brenton’s aortic coarctation and banded his pulmonary artery. Two months later, he was sent home with a feeding tube. There would be more surgeries in his future. At the age of five, Brenton’s cardiologist recommended he come to Mayo for a re-banding of his pulmonary artery, and more.

At Mayo, surgeons performed three surgeries in an individualized treatment plan that would eventually create normal blood flow into and out of Brenton’s functioning heart chambers while also allowing his body to receive the oxygen-rich blood it needed. Brenton also participated in a clinical trial at Mayo Clinic exploring whether a patient’s stem cells can help strengthen the heart enough to prolong or prevent the need for a heart transplant later in life.

Brenton tells us that today, at age 26, he still suffers some lingering physical effects and limitations because of his condition. But that hasn’t stopped him from reaching a number of important milestones: working, buying his first house, and marrying his fiancée, Kelsey, just two weeks before this year’s “Feel the Beat” event.

Congratulations to the newlyweds. And here’s to adding “happily ever after” to Brenton’s HLHS story.

Add your postscript by sharing your comments below, and by sharing this story with others.

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This story originally appeared on the In the Loop blog.

 

 


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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