Smile With Me!

The Hannah Wernke Memorial Foundation was created in memory of Hannah who fell victim to Catecholaminergic Polymorphic Ventricular Tachycardia, or CPVT, and passed away on May 15, 2005.

Hannah was eight years old, a resident of Strongsville, Ohio and a second grader at Kinsner Elementary. Hannah was a very active child, had many friends, loved life to it’s fullest, and dreamed of being a teacher.

The goal of the Hannah Wernke Memorial Foundation is to build awareness and to raise funds benefiting CPVT genetic heart research.

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IMPORTANT UPDATE – POSTED March 10, 2013

Dear Friends,

Thank you for all of your previous support of the Hannah Wernke Memorial Foundation. For a variety of reasons, including job transfers and relocations of some of our board members, we are suspending our active fundraising activities. We will not be holding the “Smile With Me! 5K Run and 1 Mile Family Walk” this year. However, we will continue to accept passive donations to support research for the deadly heart arrhythmia, CPVT.

A lot of good work continues to be done and progress continues to be made with CPVT research at the Mayo Clinic and they are very appreciative of the support. The Hannah Wernke Memorial Foundation is honored to have been awarded a place in the Mayo Clinic’s Hall of Major Benefactors. This status could never have been achieved without the help and support of many, including you!

We will continue to support CPVT research at the Mayo Clinic, as donations allow.

A few highlights from our fundraising efforts over the past 7 years include:

  • Raised over $300,000
  • Over $210,000 in CPVT research donations to the Mayo Clinic Sudden Death Genomics laboratory
  • Established a Community Scholarship fund and awarded 12 scholarships to date
  • Grants from The Rite Aid Foundation allowing for genetic testing fee assistance for 20 individuals
  • Expenses kept to about 2.5% – mostly only IRS filings and mailings

All donations have been used to support 1) Heart Arrhythmia Research and Awareness 2) Genetic Testing for Families in need and 3) community scholarships.

Please continue to check our this site for updates and information.

Donations can be made through our Donations Page.

Thanks so much for all you enable us to do!

Sincerely,

The Hannah Wernke Memorial Foundation Board

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Research

The Sudden Death Genomics Laboratory at Mayo Clinic, directed by Dr. Michael J. Ackerman, M.D., Ph.D., is dedicated to exposing the genetic causes behind these tragedies, specifically those that disrupt the heart’s electrical system. Dr. Ackerman is working to identify the genetic causes behind CPVT and to figuring out ways to defuse or protect patients from this ticking time bomb.

Our Mission: To raise funds for CPVT heart arrhythmia research through the Mayo Clinic, to build awareness of heart arrhythmia disorders such as CPVT, and to fund two college scholarships for graduating High School Seniors from Strongsville, Ohio who plan to major in education.

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Why was the Hannah Wernke Memorial Foundation Created?

The Hannah Wernke Memorial Foundation was created in memory of Hannah who fell victim to Catecholaminergic Polymorphic Ventricular Tachycardia, or CPVT, and passed away on May 15, 2005. Hannah was eight years old, a resident of Strongsville, Ohio and a second grader at Kinsner Elementary. Hannah was a very active child, had many friends, loved life to it’s fullest, and dreamed of being a teacher.

Tragically, thousands of infants, children like Hannah, adolescents, and young adults die suddenly and unexpectedly every year from undiagnosed heart arrhythmias. CPVT is one such heart arrhythmia. Other related arrhythmias include Long QT, ARVD and Brugada’s Syndrome.

Often there are no clues to the cause of death and the case is closed as sudden unexplained death. In the case of an infant, it is called Sudden Infant Death Syndrome (SIDS), and in the case of a child, it is called Sudden Unexplained Death in Childhood (SUDC).

  • CPVT is a genetic disorder of the heart’s electrical system.
  • CPVT is highly lethal heart arrhythmia that typically emerges during physical exertion or emotional stress/excitement.
  • There isn’t any known diagnostic test for CPVT beyond a “chance” ECG reading or genetic testing.
  • The first indication of CPVT is often exercise induced fainting or seizures.
  • CPVT is thought to affect as many as 1 in 10,000 people.
  • 60% of people experience their first episode by the age of 20.
  • Approximately 15% of unexplained deaths of young people may be attributed to CPVT.

The hope of the Hannah Wernke Memorial Foundation is to prevent other families from suffering the loss that has been felt since Hannah died. With your help, CPVT will be diagnosed and treated before it is too late.

The HWMF, with funding from the Rite Aid Foundation, may be able to provide some assistance with CPVT testing. Please see the following information for what the testing is, eligibility, application forms, questions and answers, etc.

CPVT Test Assistance – Introduction Letter

CPVT Testing – Questions & Answers

CPVT Testing – Assistance Program Application

CPVT Testing – Assistance Participation Survey