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The EHE Foundation

1st Annual EHE Virtual 5K Run/Walk

May 26, 2016 by The EHE Foundation

EHE Run/WalkThis run/walk is an all ages and abilities event for EHE. EHE is short for Epithelioid Hemangioendothelioma, an extremely rare and often deadly vascular sarcoma (cancer) that primarily affects adolescents and young adults.

This event is “virtual”, which means it can be done anywhere you are. You can complete the 3.1 miles by running, walking, crawling, rollerskating or any other form of exercise. We just ask you to complete it any time between April 23rd-30th, so we are all doing it “together”. You can complete it alone or with others who register.

For up-to-date information about contests, unique ideas, and prizes, visit our face book event page: https://www.facebook.com/events/782272705249775. We encourage you to upload pictures wearing your race shirt. The pictures can be taken before, during, or after the 5K. We will have different photo contests with prizes. After the event, the pictures will be used to make a slide show. Don’t forget to tag yourself in your photos!

The registration fee is just $25 and includes a race bib, t-shirt, EHE bracelet, and a “Just Live” temporary tattoo. Registration ends on April 1st.
This is a global event to help spread awareness and raise funds for EHE research.

Note: Each participant will need to go through the registration process individually. If you’re registering for five (5) or more people at once, please contact [email protected] directly to register.

If you do not have paypal and would prefer to pay by check, please contact [email protected].

Filed Under: Fundraising & Events

Fighting with Laughter – The EHE Foundation and The Hope Gala

January 8, 2016 by The EHE Foundation

Saturday, January 30, 2016 2:30 PM

Gotham Comedy Club – The Vintage Lounge 208 W 23rd St New York, NY 10011

Click here for tickets!

Hope GalaMandy O’Connor, a Penn State graduate and THON participant, fought Epithelioid Hemangioendothelioma (EHE) for more than a decade. EHE is a rare and often deadly vascular sarcoma (cancer) that largely affects adolescents and young adults. Mandy was diagnosed during her sophomore year at Penn State. While undergoing chemo she served on the morale committee for THON 2004, 2005 and 2006. Mandy was full of life was always smiling, and always laughing. In line with this sentiment, today is to honor Mandy’s memory by fighting with laughter, the best medicine.

The Hope Gala is committed to conquering childhood cancer by raising awareness, providing financial assistance, and supporting the fundraising efforts of Penn State Dance Marathon (THON), which benefits Four Diamonds, through our annual gala and year-round fundraising.

The purposes of The EHE Foundation are to support doctors and researchers in the treatment and cure of Epithelioid Hemangioendothelioma (EHE), and to improve the quality of life of patients and their families.

All proceeds from this event will be split between The EHE Foundation and The Hope Gala.

http://fightehe.org/
http://www.nychopegala.com/

Lineup coming soon!

Filed Under: Fundraising & Events

Justin Bryan is One Tuff Dude

December 8, 2015 by The EHE Foundation

Just Bryan and TuffIn October of 2015, Justin Bryan endured a 10-day trek up 19,341 feet of elevation as he scaled the peak of Mount Kilimanjaro in Tanzania. Not too shabby for a man who was told 12 years earlier that he would need to have his leg amputated due to EHE.

The year was 2003, and Bryan was serving his country in the United States Air Force when doctors informed him he had cancer in his right leg. After two masses were removed, the disease was also found in his leg’s bone and soft tissue.

“As a young person, you’re thinking how the rest of your life is going to be changed, if you even have a rest of your life,” Bryan said recently. “Certainly I was worried about dying, about it killing me. I was worried about losing my leg.”

Accompanied by his family, Bryan received a second opinion from an oncologist who felt the isolated nature of the cancer made it a prime candidate for radiation. Though the EHE in his leg was not completely eradicated, it has remained indolent and has not spread.

Two years ago, his wife Kate got the news most loving wives likely dread: her husband was planning to climb a mountain. Not just any mountain, but the highest summit in Africa, one that is well above the life-threatening high altitude pulmonary edema (HAPE) elevation grade.

But as an EHE warrior, Justin is all too familiar with life-threatening challenges. Along with three friends, “Tuff” also made the trip up Mt. Kilimanjaro. Tuff is the new mascot for The EHE Foundation, and Bryan wanted the furry stuffed animal to reach the peak with him to prove to other EHEers they can still achieve amazing things.

For more information on Justin’s incredible journey, visit http://www.thesmallthingsblog.com/2015/10/climbing-mt-kilimanjaro.

Filed Under: Uncategorized

Texas Hold ‘Em Fundraiser in Memory of Brian Frank

August 11, 2015 by The EHE Foundation

Brian FrankCOME OUT & PLAY: TEXAS HOLD’EM FUND RAISER FOR EHE CANCER RESEARCH IN MEMORY OF OUR SO LOVED AND MISSED, ALWAYS IN OUR HEART ……BRIAN FRANK

Saturday, August 29 at 12:30pm in PDT

20838 SE 240th St. Maple Valley WA 98038

EHE or Epithelioid Hemangioendothelioma is a extremely rare vascular cancer that only effects 100 people a year worldwide. It is very hard to diagnose due to the fact it is so rare. Many doctors have never even heard of it. Dr. Brian Rubin of the Cleveland Clinic is the only doctor that is actively studying EHE. He relies only on donations to fund his research.

Brian Frank passed away in September from this horrible cancer, he was only 28! He was sick for 6 months and not one doctor could tell him what he had. Unfortunately he passed before he was diagnosed. Autopsy showed that he had EHE. Brian’s tissue samples have been sent to Dr. Rubin. He is actively studying them in hopes to get some answers about EHE.

Every amount donated will greatly help another young person with EHE! I know Brian would love if we could help someone else and possibly save lives

What is EHE (Epithelioid Hemangio-Endothelioma) Cancer?

http://www.cravatfoundation.org/hemangioendothelioma/

Where your donations will go to:

http://ccf.convio.net/site/TR/DIY/CCFTeamRaiser?px=2538406&pg=personal&fr_id=1360#.VXsKykbLnFB

http://www.cravatfoundation.org/

Buy-in: $50

$30 goes to the cause; $20 goes to the pot.

CARDS IN THE AIR: 2:00!! So important….PLEASE be timely, there will be a lots of players and will take all night to play.

• Please show up early to eat and get comfortable, also to find your seat and buy your chips to start the game.

• There will be volleyball, horseshoes, and other lawn games for those who are not playing cards. Kids are welcomed, (just asking that the young ones not be around the game tables & away from the alcohol))

• We want this to be a BIG BBQ with lots of fun for family and friends kind a day!!

GAME RULES:

Winnings will be divided depending on how many people play. Example: with 50 players we can expect $1,000 in prize money. We also hope to have some gift cards & prizes to be included for winners. Each player starts with 5000 in chips, blinds start at 25/50 and go up every 20 minutes. Re-buys will be allowed for a set period of time. 100% of re-buys goes to the cause. This should allow for steady action. After the main tournament is over, additional single table ‘loser’ tournaments can form if there is interest (same format as above). Message us if you have any questions.

1. Charlie & Kendy will be supplying all the hamburgers, brats, hotdogs you can eat and we will have water bottles too!

2. Everyone will be responsible for their own drinks and Ice. Just bring your coolers.

3. Please if you can….bring a appetizer to share. For example: chips & salsa, hotwings, cheese dips, your favorite yummy appetizer. We need this to keep everyone full of energy for the long day and night.

4. We are asking that everyone leave their animals at home, please. This will help keep the distraction down and barking at bay. Much love.

*******************************UPDATE**********************
Time is sneaking up on us and we NEED help with the following items.

…………………..WHAT WE NEED HELP WITH………………….……

Please “COMMENT” on this post or message my FaceBook or email ([email protected]) me what you can help out with. I will keep a list of who is doing what.

1. If you have not yet replied “going” to attend please do so, I need to get an accurate head count for players and for food.

2. We NEED CHAIRS!!! any kind will work!

This will be a long day & night and if you are drinking PLEASE don’t drive!!! We have room so you can bring your motor-homes,campers,trailers, even tents, there is plenty of parking room. We have room for anyone that needs to stay and sleep!

Filed Under: Fundraising & Events

Mandy O’Connor

August 5, 2015 by The EHE Foundation

Mandy and Devin O'ConnorMandy O’Connor, a York native, Penn State graduate, and THON participant, fought Epithelioid Hemangioendothelioma (EHE) for more than a decade. EHE is a rare and often deadly vascular sarcoma (cancer) that largely affects adolescents and young adults. Mandy served on planning committees for Relay For Life and volunteered as a Team Captain and routinely spoke at American Cancer Society events. She was passionate about fighting cancer, especially those primarily targeting children. For her 30th birthday, she raised money for Alex’s Lemonade Stand, an organization trying to eradicate childhood cancer. Mandy passed away April 5th, 2015, at Johns Hopkins Hospital at the young age of 31.

Filed Under: Uncategorized

Ava’s Story

August 4, 2015 by The EHE Foundation

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!

Filed Under: Uncategorized

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