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Wed, Nov 8 10:29am · Thank YOU for attending Feel the Beat 2017!

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We had a fantastic event on Saturday, October 14 here at Mayo Clinic for the fifth annual Feel the Beat event! There were over 270 attendees from 12 states and Canada who traveled all the way to Rochester, Minnesota.

We had a great lineup of speakers from Karen Wanek, Brenton Ball, Erin Borkowski, Diane Pickles and Annie Ritchings. We also had physician members speak from the HLHS Consortium – Dr. Frank Cetta from Mayo Clinic, Dr. Joseph Rossano from Children’s Hospital of Philadelphia, and Dr. Subramanyan from Children’s Hospital Los Angeles.

It was an exciting day and we are all happy you could be a part of it!

Make sure to mark your calendars for next year’s Feel the Beat event on September 8 in Rochester, MN!

 


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. Email the program at HLHS@mayo.edu to learn more.

Thu, Oct 26 10:33am · Three reasons why the flu shot is important

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  1. The flu shot helps prevent against the flu. The flu shot is a vaccine that helps prevent against certain strains of the Influenza virus – the virus that causes flu. It takes two weeks after receiving the shot for the body to build up immunity, and it is important to get vaccinated each year because every year there are different strains of the flu that the shot protects against.
  2. Young children with hypoplastic left heart syndrome (HLHS) may face complications due to the flu. While healthy children and adults may only have cold-like symptoms, individuals with other healthcare concerns may need escalated medical support. HLHS patients who get influenza can become critically ill.
  3. If people around patients with HLHS are vaccinated against the flu, they act as a barrier and protect the patients from getting the flu.This concept is known as herd immunity which protects people with compromised immune systems when the majority of the population is able to shield them from the virus.

Sometimes it is not possible for some individuals to get the flu shot. It’s essential to always discuss your specific situation with your care team but generally, the flu shot is recommended for everyone over the age of six months.

 


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. Email the program at HLHS@mayo.edu to learn more.

Mon, Oct 16 1:24pm · Novel Stem Cell Treatment Means New Lease on Life in HLHS

Hi @carkatsue! Great questions. This clinical trial is for individuals with hypoplastic left heart syndrome (HLHS). For more information on the benefits/risks, please send the program an email at HLHS@mayo.edu. Thanks!

Tue, Oct 3 7:23am · What do we know about the genetics of HLHS?

 

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One of the main goals of The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is to find the genetic cause of the congenital heart disease (CHD). Here’s what we know so far:

There is no single gene that causes 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 variants in specific genes have been linked to HLHS, they are identified in a very small subset of individuals.

The genetics of HLHS is complex. While there isn’t a single gene that causes HLHS, the same genetic variant may cause many different types of CHD. In fact, multiple studies have shown a strong familial clustering of HLHS with other CHDs. 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.

It gets even more perplexing. The term incomplete penetrance in genetics means that an individual may carry the same variant thought to cause HLHS in one family member but that same individual does not have any sort of CHD. 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.

That’s why our HLHS 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).  It is our goal to fully understand the genetics picture to find better ways to provide solutions for HLHS. To learn more or to participate in the research program, 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.

 

 

Fri, Sep 29 7:49am · Attending Feel the Beat? Here are some things you’ll want to know.

If you are attending Feel the Beat on October 14, you’ll want to know what to expect when you arrive in Rochester, MN. We’ve got you covered to help with your planning!

Accommodations

Centerstone plaza hotel                                                                              Centerstone Plaza Hotel

The CenterStone Plaza Hotel has a special rate for Feel the Beat attendees. You’ll want to act quickly, though, as the deal is only valid until tomorrow. The discounted rate is $89 a night. To book a room, call the hotel directly at 1-800-366-2067 and mention “Feel the Beat”.

Weather

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So far, we have been seeing above average temperatures but that has been known to change without a moment’s notice. Make sure to bring a jacket in case it starts to get cold.

Sightseeing

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There are many things to do in and around Rochester. Some of the highlights include:

Take a tour of Mayo Clinic. Mayo Clinic offers tours Monday through Friday at 10 a.m. for patients and their guests. In addition to the regular tours, Mayo also offers a daily art tour Monday through Friday at 1:30 p.m.

Explore the downtown area including Peace Plaza and Historic Third Street. For a complete list of activities and events, visit Rochester’s Visitors Bureau site.

Get outside to visit one of the numerous parks and nature centers around Rochester. There’s Quarry Hill Nature Center, Soldiers Field, and Silver Lake, to name just a few.

Local restaurants

Rochester’s restaurant scene continues to grow year after year. The top restaurants can be found online but there are also great restaurants within walking distance of Mayo Clinic.

Shopping

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Over the last few years, Rochester’s downtown area has really expanded and now even includes a few shops. If you are looking for a wider selection, take a trip to Apache Mall located a few miles south of Mayo Clinic. For those interested in the full shopping experience and more, head to the Mall of America, one of the largest shopping malls in the U.S., complete with an amusement park and an aquarium. Mall of America is approximately 80 miles north of Rochester.

Parking

There are a few different parking options around Mayo Clinic. If you want to park on the street, metered street parking is always an option, but be sure to carry change to feed the meters. There are also many parking garages located throughout Rochester. Street parking is typically free on the weekends. For more information, visit here.

Can’t make it to Rochester, MN on October 14? Follow us on Facebook and Twitter that day to follow along.


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.

 

 

 

Thu, Sep 21 9:02am · Register by tomorrow for HLHS Feel the Beat 2017!

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Registration officially closes tomorrow for the fifth annual HLHS Feel the Beat event held on October 14. It’s going to be a great day filled with inspiring guest speakers, updates on the ongoing HLHS research, and an exciting afternoon surprise!

Read more about our featured guest speakers Brenton Ball, Erin Borkowski, Diane Pickles and Annie Ritchings.

For those of you traveling to Rochester, Minnesota to attend Feel the Beat, we have a block of rooms reserved at the CenterStone Plaza Hotel. The discounted rate is $89 a night. To book a room, call the hotel directly at 1-800-366-2067 and mention “Feel the Beat”. Reservations must be made by September 30.

Can’t wait to see you there on October 14!

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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. To learn more or to participate in the research, email HLHS@mayo.edu and follow the HLHS program on Facebook, Twitter and Instagram.

Fri, Sep 15 7:58am · HLHS Feel the Beat 2017: Agenda

In addition to the phenomenal speakers we have at Feel the Beat this year, we also have a jam-packed day full of activities. Check out the day’s agenda below.

If you haven’t registered for Feel the Beat, make sure you do so before September 22. For those of you who can’t attend in person, we will be streaming our guest speaker panels on our Facebook page. Stay tuned for more details.

 

FTB-agenda

 

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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. To learn more or to participate in the research, email HLHS@mayo.edu and follow the HLHS program on Facebook, Twitter and Instagram.

Fri, Sep 8 9:05am · HLHS Feel the Beat 2017: Diane Pickles and Annie Ritchings

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(Diane Pickles and Annie Ritchings)

Two more amazing guest speakers who will be at our Feel the Beat event on October 14 are Diane Pickles and Annie Ritchings. We are very excited to have them and can’t wait for you to also hear what they have to say.

If you haven’t registered for Feel the Beat, make sure you do so before September 22. For those of you who can’t attend in person, you are in luck because we will be streaming our guest speaker panels on our Facebook page. Stay tuned for more details.

Diane Pickles

Diane Pickles is mom to Jake, a 22-year-old living with hypoplastic left heart syndrome (HLHS).  Diane joined the board of Sisters by Heart in 2014 and has been actively involved in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) leadership team since 2012.  She is a Vice President of M+R, a national advocacy consulting firm and has extensive experience leading both state and national public policy campaigns.  A long-time volunteer for the American Heart Association, she served as a Massachusetts Go Red spokeswoman in 2013, is Chair of the Massachusetts chapter’s Statewide Advocacy Committee, and received the Ray and Gina Driscoll Heart and Minds Lifetime Achievement Award in 2014.  Diane has volunteered on several initiatives with Boston Children’s Hospital and was a Faculty Editor of “Pediatrics in Practice: A Health Promotion Curriculum for Child Health Professionals”.  She is a Public Member of the American Board of Pediatrics Board of Directors.

Annie Ritchings

Annie Ritchings was born in Lima, Peru in 1979 with HLHS, pulmonary stenosis, double inlet right atrium and double outlet right ventricle. She was adopted and had the two stage HLHS process, BT Shunt and classic Fontan at Boston Children’s Hospital. She later developed CHF and cardiac cirrhosis. Annie works full-time as a dual executive assistant and project coordinator for a prominent Boston health care system. When she’s not working, she is studying to get into nursing school or can be found volunteering at Quincy Animal Shelter. Annie is also an admin to the “Post Fontan CHD & Liver Challenges” on Facebook.

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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. To learn more or to participate in the research, email HLHS@mayo.edu and follow the HLHS program on Facebook, Twitter and Instagram.