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4 days ago · 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.

Thu, Aug 31 8:42am · HLHS Feel the Beat 2017: Brenton Ball and Erin Borkowski

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The theme for Feel the Beat 2017 is ‘inspiration,’ and we’re planning a terrific slate of speakers for it.  You’ll hear from inspiring HLHSers, parents, and doctors on October 14. (If you can’t attend in person, make sure you head over to Facebook to watch a live broadcast.)

Here are two of the guest speakers joining us this year. Check back next week to find out who else will be speaking and don’t forget to register!

Brenton Ball

Brenton, an HLHS Heart Warrior, is a strong advocate for the congenital heart defect community. He was born in 1990 in Carroll, Iowa with hypoplastic left heart syndrome (mitral valve atresia, hypoplastic aorta, coarctation of the aorta, hypoplastic left ventricle and multiple VSDs).

He has had multiple surgeries including banding of his pulmonary artery, shunt replacement, modified Fontan procedure and 3 pacemaker surgeries.

Brenton graduated from culinary arts school with a degree in hotel and restaurant management in 2012. He enjoys cooking at home and working at a local hotel.

Brenton recently celebrated his one year wedding anniversary with his wife Kelsey.

Erin Borkowski

Erin lives in Lafayette Hill, Pennsylvania with her husband Justin, daughter Bella and son Justin.  As Bella’s mom and the co-founder and CEO of Beats for Bella, she works diligently to increase awareness of congenital heart defects and HLHS by sharing Bella’s story.

Along with a tremendous support system of family and friends, Erin, together with many volunteers, runs events to raise money for CHD and HLHS research.  Since its inception in February of 2014, Beats for Bella has raised over $100,000 to support CHD research, and has been featured in the local news and local print media.

Through Beats for Bella, Erin is committed to supporting the most promising advancements in research so that the future for CHD warriors continues to be bright.  In addition, Erin sits on the board for Mended Little Hearts Philadelphia Region.  MLH strives to provide support for local families who have a child with a congenital heart defect through programs within the cardiac unit at the local children’s hospitals.

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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.

Thu, Aug 24 8:38am · What is HLHS Feel the Beat?

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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.

Now in its fifth year, Feel the Beat has grown and continues to bring together families, advocates, researchers, and physicians to transform the future of HLHS. Focusing on a different theme each year, this year’s theme is inspiration and will highlight inspirational stories within the HLHS community. In addition to hearing from HLHS patients and parents, attendees will also learn about the recent research results from the program and take part in engaging activities!

Please join us on October 14, 2016 from 8:30 a.m. until 3 p.m. in Rochester, MN.

Register for Feel the Beat today!

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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.

Thu, Aug 17 7:42pm · Novel Stem Cell Treatment Means New Lease on Life

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Halloween is an especially meaningful day for Jared Ausnehmer and his family. On Oct. 31, 2011, Jared’s family saw a news story about a man who had had stem cells injected into his heart to reverse damage from a heart attack. Jared’s mom, Patty Ausnehmer, wondered if this type of treatment could help her son, who was born with hypoplastic left heart syndrome — a birth defect in which the left side of the heart is underdeveloped or nonexistent.

The news story kicked off a search for answers that led Jared and Patty to Mayo Clinic’s Rochester campus, where he participated in an innovative clinical trial. The trial paved the way for Jared to have successful heart surgery. As a result, Jared is no longer weighed down by his heart condition, and he’s returned to the athletic activities he enjoys.

“Mayo Clinic is an amazing place. They care, and they know what they’re doing,” Jared says. “I’m most grateful that I’m not sick anymore and everything went well. You can’t take that for granted.”

Search for something better
A rare congenital heart disease, hypoplastic left heart syndrome affects only about 1,000 newborns in the U.S. each year. Jared received a variety of treatments, including multiple surgeries during his first year of life and medications to improve his heart function. Still, by the time Jared reached his early 20s, his heart was enlarged and its neoaortic valve was leaking badly.

“I just didn’t feel well. I was tired all the time and was retaining a lot of fluid,” says Jared, who went from playing basketball and softball, and running track in the Special Olympics, to lying on the couch all day.

Eager for a new treatment option, Patty called the hospital that was mentioned on the news. Unfortunately, they weren’t doing stem cell therapy for Jared’s condition. But she didn’t stop there. The story spurred Patty to learn more about the possibility of stem cell therapy for hypoplastic left heart syndrome.

In the course of her research, Patty found Mayo Clinic’s Center for Regenerative Medicine and had a phone consult with Tim Nelson, M.D., Ph.D., a Mayo Clinic physician and researcher whose work focuses on congenital heart disease. Dr. Nelson told Patty that Mayo Clinic was starting stem cell therapy for infants with hypoplastic left heart syndrome but not for young adults like Jared.

“I explained our mission and desire to design such a trial in the future,” Dr. Nelson says.

Although treatment with stem cells wasn’t an option at that time, Jared and his family learned that through Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome, he could participate in another study and receive care from Mayo Clinic doctors with years of experience in treating the condition until a stem cell clinical trial became available.

Read the rest of the story on Sharing Mayo Clinic. 

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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.

Wed, Aug 16 8:11am · Sisters by Heart joins Mayo Clinic and the HLHS Consortium

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Sisters by Heart, the largest hypoplastic left heart syndrome (HLHS) non-profit in the United States, has officially joined the HLHS Consortium created by Mayo Clinic’s Todd and Karen Wanek Family Program for HLHS. They become the third member of the HLHS consortium in addition to the Children’s Hospital of Philadelphia.

This exciting announcement between the Todd and Karen Wanek Family Program for HLHS and Sisters by Heart marks a unique and powerful collaboration. Parents and patients now have a seat at the leadership table with clinicians from the inception of the initiative to work together to spur advancements to bring about better long-term outcomes for HLHS.

The collaboration which Sisters by Heart joins is a first-of-its-kind consortium. It aligns regional centers into a nationwide collaboration led by the Todd and Karen Wanek Program at Mayo Clinic to accelerate and grow HLHS focused innovation, discovery sciences, and clinical expertise by investing local resources back into research. The program seeks to work with 5 – 7 regional centers across the US to fund the development of cell-based innovative research opportunities to transform the lives of people living with HLHS.

Bringing parents and patient voices directly to the table with Sisters by Heart as a member and research collaborator within the consortium will help to enhance the care for individuals with HLHS.

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

Mon, Aug 14 12:16pm · You are invited to HLHS Feel the Beat 2017!

You are invited to the fifth annual Feel the Beat event on October 14, 2017 in Rochester, Minnesota! Sign up today and check back soon for more information on our featured guest speakers and the day’s agenda.

FTB invite for blog

 

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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.

Tue, Jul 25 12:54pm · What is protein-losing enteropathy (PLE) and how it is related to HLHS?

HLHS heart with label-1 (2)

Protein-losing enteropathy (PLE) is a rare and complicated disorder regarding the loss of proteins in the intestines. The signs and symptoms of PLE include bloating, diarrhea, edema, pleural effusions, ascites, and failure to thrive.

In some situations, PLE can occur after the Fontan procedure. The Fontan procedure is typically the third surgery for patients with hypoplastic left heart syndrome (HLHS) that reduces the amount of work of the right ventricle. During this procedure, the surgeon creates a path for the oxygen-poor blood in one of the blood vessels that returns blood to the heart (the inferior vena cava) to flow directly into the pulmonary arteries. The pulmonary arteries then transport the blood into the lungs. This procedure allows the rest of the oxygen-poor blood returning from the body to flow to the lungs. After this procedure, there’s no mixing of oxygen-rich and oxygen-poor blood in the heart.

Currently, there is no single treatment for PLE but rather multiple treatments used together to decrease the loss of proteins. These treatments can include a variety of options including dietary changes, medications, and sometimes surgical or catheter-based interventions. Talk to your doctor or care team for more information.

PLE does not exclude participation in research studies here at the Todd and Karen Wanek Family Program for HLHS. Email the program at HLHS@mayo.edu to find out more.

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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.