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Thu, Sep 13 8:36am · Thanks for attending Feel the Beat 2018! in HLHS

Hi Michelle – we will be sharing photos from the event, but it will take a few weeks to a month to get them out.

Wed, Sep 12 11:59am · Thanks for attending Feel the Beat 2018! in HLHS

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Thank you so much for attending Feel the Beat 2018! We had a total of 176 guests at the event, many of whom traveled far and wide to join us.

This year’s theme was evolution at Feel the Beat. The event included a patient/parent panel with speakers Gabrielle Wanek, Michelle Waletzko, and Elizabeth Raszka. We also had physicians speak on how caring for HLHS patients has evolved with presentations from Dr. Tim Nelson from Mayo Clinic, Dr. Wernovsky from Children’s National in Washington D.C., and Dr. James Tweddell from Cincinnati Children’s Hospital. You can find videos of this panel and of these presentations on our Facebook.

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

Stay tuned for the date for next year’s Feel the Beat!

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.

Wed, Aug 29 2:42pm · This year's agenda for Feel the Beat! in HLHS

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Feel the Beat agenda – September 8, 2018 – Gonda building

8:00 am to 9:00 am – Registration and breakfast

 

9:00 am to 9:25 am – Welcome message, Dr. Timothy Nelson, Geffen Auditorium

 

9:25 am to 9:55 am – Dr. James Tweddell, Geffen Auditorium

 

10:00 am to 10:30 am – Dr. Gil Wernovsky, Geffen Auditorium

 

10:35 am to 10:45 am – break

 

10:45 am – 11:45 am – Patient/parent panel, Geffen Auditorium (Moderator: Dr. Timothy Nelson)

  • Michelle Waletzko
  • Gabrielle Wanek
  • Elizabeth Raszka

11:45 am – 1:30 pm – Lunch and science fair, Nathan Landow Atrium

  • Science Fair – “Evolution” How the program has evolved, lessons learned from studies/research participation

11:45 pm – 3:00 pm – Afternoon activity benefitting the Ronald McDonald House in Rochester, MN

  • Blanket tying
  • Card creating

Registration is now live for the sixth annual Feel the Beat event on September 8 in Rochester, Minnesota. We look forward to seeing you there!

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions 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.

Wed, Aug 22 9:11am · Gabrielle Wanek and Michelle Waletzko Speaking at Feel the Beat 2018! in HLHS

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Gabrielle Wanek
Gabrielle is a twenty-three-year-old with hypoplastic left heart syndrome. She was born in Genolier, Switzerland and has had multiple surgeries including the Norwood procedure, directional Glenn procedure, the Fontan procedure, and three catheter procedures. She grew up in a small town in western Wisconsin with her parents and her older brother.

Gabrielle lives in North Carolina where she is currently attending High Point University. She will graduate in December of 2018 with a degree in communication and a focus in video game design. She worked as a resident assistant in her dorm on campus this past year.

 

In her free time, she loves to write, ski, and play video games. This past summer, Gabrielle interned at Mayo Clinic’s Todd and Karen Wanek Family Program for HLHS and wrote a series of blog posts about living with HLHS.

She believes that it’s important to understand what those who have a congenital heart disease have gone through. Our past proves the trials that we have been able to overcome. HLHS doesn’t define who she is but it most certainly has shaped some of it, however, it has never stopped her from doing the things that she has tried to do. Understanding the past allows you to prepare for the future.

 

Michelle Waletzko
Michelle resides in Kasson MN with husband Andy, daughter Teagan (5) and heart warrior Isaac, almost 3 years old.  Isaac had his first heart surgery before he was born, at 21 weeks gestation at Boston Children’s Hospital.  Doctors there performed a fetal aortic balloon angioplasty, attempting to prevent Isaac from developing HLHS; however, he was still born with HLHS and near intact atrial septum at 35 weeks.

Michelle found it difficult to find local support dealing with Isaac’s HLHS diagnosis. This drove her to use social media to reach out and lend support to other heart moms and families.  Today Michelle has made connections with heart families locally and nationwide. Michelle makes time to actively be a part of the heart community, sharing her family’s story and helping other families get through the many unique circumstances only heart moms have been through.

Michelle, along with an abundance of family and friends, call themselves Isaac Williams’s Warriors. Together they have raised funds to support CHD and HLHS research. Through Lasting Imprint, they have provided hospital bags for families.  For the past 2 years, they have participated in toy drives for the cardiac ICU “toy closet” at St. Mary’s Hospital, Mayo Clinic and is available for heart families.  Recently, Isaac William’s Warriors have been able to provide 2 hospital wagons for the cardiac ICU as well.

Looking forward to seeing you on September 8!

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions 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.

Wed, Aug 15 8:30am · Attending Feel the Beat? We’ve got you covered on where to stay and things to do! in HLHS

 

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If you are attending Feel the Beat on September 8, you’ll want to know what to expect when you arrive in Rochester, Minnesota. Make sure to register for the event or email us at HLHS@mayo.edu if you have any questions.

 

Accommodations

We have a block of rooms reserved at the Kahler Grand Hotel until August 17, 2018 for $98 a night. Call 1-800-533-1655 and mention “Feel the Beat” to reserve a room. (Hurry! The deal is almost over!)

 

Weather

September is typically a great month to visit Minnesota. It isn’t too hot and the cold and snow have yet to blanket the state. To play it safe, bring a jacket, just in case it gets a bit chilly or if you are from a warmer climate.

 

Sightseeing

There are many things to do in and around Rochester.

 

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.

 

Explore the downtown area including the Rochester Art Center and Peace Plaza. For a complete list of activities, restaurants and events, visit Rochester’s Convention and Visitors Bureau site and the Rochester Downtown Alliance site.

 

Shopping

Rochester’s downtown area has expanded and 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. If you are interested in a 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, an aquarium, mini golf, and The Escape Game.

 

Parking

There are a few different parking options around Mayo Clinic. If you want to park on the street, metered parking spots are always an option, but be sure to have change to feed the meter. There are also many parking garages located around Rochester. Street parking is typically free on the weekends.

 

Looking forward to seeing you on September 8!

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions 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, Aug 6 2:01pm · What is Feel the Beat and why should you attend? in HLHS

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The HLHS Feel the Beat event is a family-friendly event for anyone and everyone interested in learning more about hypoplastic left heart syndrome (HLHS) and the work the Todd and Karen Wanek Family Program for HLHS is doing.

 

Feel the Beat was created in 2013 as team members from the HLHS program were looking for ways to bring together HLHS families and a way to thank research participants for all that they’ve done for the program. Without support and participation from families, none of the program’s research work would be possible.

 

The sixth annual HLHS Feel the Beat event will take place this year on Saturday, September 8 at Mayo Clinic. This year’s theme is “evolution” of the program so you will get a chance to see how far the HLHS program has come and what has been accomplished. We hope you can join us and make sure you register for the event!

 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions 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.

 

Fri, Aug 3 8:26am · Feel the Beat 2018 in HLHS

Hi – it is not only okay, it is encouraged. Jemma will be very welcome!

Tue, Jul 31 10:54am · Feel the Beat 2018 in HLHS

Hi! You'll find the tentative agenda below. I will be making an official blog post about our Feel The Beat schedule soon! See you there!

Feel the Beat agenda – September 8, 2018 – Gonda building

8:00 am to 9:00 am – Registration and breakfast

9:00 am to 9:25 am – Welcome message, Dr. Timothy Nelson, Geffen Auditorium

9:25 am to 9:55 am – Dr. James Tweddell, Geffen Auditorium

10:00 am to 10:30 am – Dr. Gil Wernovsky, Geffen Auditorium

10:35 am to 10:45 am – break

10:45 am – 11:45 am – Patient/parent panel, Geffen Auditorium
· Michelle Waletzko
· Gabrielle Wanek
· Elizabeth Raszka

11:45 am – 1:30 pm – Lunch and science fair, Nathan Landow Atrium
Science Fair – “Evolution” How the program has evolved, lessons learned from studies/research participation

1:30 pm – 3:00 pm – Afternoon activity