The EHE Foundation

Ava’s Story

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AvaAva is an eight year old girl from Langhorne, PA, where Sesame Place is located. We are about 25 miles from Center City Philadelphia. Ava loves swimming and going to Sesame Place, since it is a water park. Ava loves drawing and takes an Art class on Saturday mornings. She also takes dance class (Hip-Hop) and loves to sing.

Ava loves music. She loves Taylor Swift and One Direction. Her first concert was the Beach Boys when she was five years old. She has also seen One Republic in concert.

Ava is just finishing Second grade at Herbert Hoover Elementary. Ava likes school. She is outgoing and has many friends. Ava has an older brother, Nicholas, who is ten. They are very close. Ava also has eleven cousins and is very close with all of them too.

Ava was diagnosed with EHE February 2014. She has tumors in her liver and lungs and is currently stable and treated with Sirolimus with quarterly monitoring.

We are looking forward to a great summer, beginning with a trip to Hawaii through the Make-A-Wish foundation. We pray that we beat this disease and Just Live!

ASCO Talks About EHE

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The American Society Clinical Oncologists (ASCO) met in Chicago in May of 2015, for their annual meeting. The theme, Illumination and Innovation: Transforming Data into Learning, aims to improve patient care across the globe through the application of shared knowledge. This is especially important when talking about rare sarcomas. Jane Gutkovich, Vice President of The EHE Foundation, was able to coordinate a meeting of 13 sarcoma specialists to talk about specifically about EHE.

There was detailed discussion about current research and lack of treatment protocols. The Patient Registry at Patient Crossroads is seen as a vitally important source of information and data.

Dr. Rubin, of Cleveland Clinic, and the primary researcher for EHE suggested we arrange a full-day EHE conference some time in the next year.

For Jane’s full summary of the meeting, click here.

Golf Outing to Benefit The EHE Foundation & Cleveland Clinic Big Sucesss

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The York EHE Foundation hosted its 1st Annual Golf Outing to benefit the EHE Foundation and Cleveland Clinic on Friday, July 17, 2015. The event was a huge success raising over $17,000 for our cause!

 

Mandy O’Connor

Mandy Elizabeth O’Connor was born in Seoul, South Korea, but became the daughter of Paul and Virginia Markel just months later and moved to York County, Pennsylvania. She would humorously say she was a southern Pennsylvania girl trapped in an Asian’s body, and when she became an O’Connor when she married her husband Devin in 2010, she would tell people, “I’m Irish, can’t you tell?” 

She was passionate about many things including landscape design, her profession, and numerous hobbies including cooking, gardening, photography, yoga, traveling, music, fishing, and much more. But it was her family and friends whom she was most passionate. 

Mandy was diagnosed with EHE in 2003, and fought the disease for more than a decade. She loved birthdays and helped so many others realize that birthdays are to be celebrated, not dreaded, as too many don’t get enough of them. 

Mandy passed away April 5th, 2015, at Johns Hopkins Hospital at the young age of 31. But in heaven, everyday is like a birthday. 

Golf Outing to Benefit The EHE Foundation & Cleveland Clinic

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York EHE Foundation Golf Event InfoAny golfers in the York, Pennsylvania area? Devin O’Connor is hosting a golf tournament to benefit EHE Research this summer. If you don’t golf, come out and enjoy a BBQ dinner, silent auction, and other raffles. Delaney and I are going and we would love to fill a table or two with our EHE family members!

 

Mandy O’Connor

Mandy Elizabeth O’Connor was born in Seoul, South Korea, but became the daughter of Paul and Virginia Markel just months later and moved to York County, Pennsylvania. She would humorously say she was a southern Pennsylvania girl trapped in an Asian’s body, and when she became an O’Connor when she married her husband Devin in 2010, she would tell people, “I’m Irish, can’t you tell?” 

She was passionate about many things including landscape design, her profession, and numerous hobbies including cooking, gardening, photography, yoga, traveling, music, fishing, and much more. But it was her family and friends whom she was most passionate. 

Mandy was diagnosed with EHE in 2003, and fought the disease for more than a decade. She loved birthdays and helped so many others realize that birthdays are to be celebrated, not dreaded, as too many don’t get enough of them. 

Mandy passed away April 5th, 2015, at Johns Hopkins Hospital at the young age of 31. But in heaven, everyday is like a birthday. 

Delaney Wahl

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Delaney WahlOn April 22, 2014, Delaney was diagnosed with an extremely rare form of cancer called Epithelioid Hemangioendothelioma, also known as EHE. This form of cancer has absolutely zero funding or attention from outside sources because so few people are affected by it. Every penny of research has been funded by EHE patients, families, and friends. EHE families are trying to raise funds for EHE research. We hope to find a cure, or at least a treatment, to help Delaney and all of our EHE family. There are 20-200 people worldwide that are diagnosed with EHE each year. This makes Delaney literally one in a million. Delaney was diagnosed with EHE after having a tumor removed from her left bicep. She has handled all of this like a champ and she wears her scar like a badge of honor. There is not a cure for EHE or even a set treatment developed. Every patient, including Delaney, is considered experimental. Her current course of treatment will be full body CTscans/MRIs/PETscans every three months…and to treat each tumor individually if and when they develop. Her next set of scans is in June. We need Team Laney to help raise funds and awareness! Our family is amazed, humbled, and truly grateful for the support and love from all of you! Click here to visit the Team Laney Cure EHE Facebook page.