On September 2017 the 3rd annual fundraising event in memory of Brian Frank raised $7000.00 for The EHE Foundation.

Celebrating Justin Herald

On June 3r and 4th there was a softball tournament held in memory of Justin Herald,
Stephanie Herald :“Memorial softball tournament for my man Justin Herald. Part of the money raised will go to the EHE foundation to help with finding a cure! So thankful we have such a giving community that will not only keep his memory alive, but give for the cause for so many still fighting the battle!! Thank you everyone for being such a major support in our journey. Couldn’t have done it without you all!

Cortney Herald Walters: “I wanted to share a picture from the memorial softball tournament in memory of my brother Justin Herald that was held this past weekend. We had a wonderful turn out and our family is so blessed by all the support from our community and so happy we can help by donating to the EHE foundation. I know Justin would be so proud to lend a helping hand to other families. Prayers to everyone!”

Jane Biddlecombe hosts High Tea in Darwin

At the very start of April Jane Biddlecombe hosted a High tea for 50 fabulous and very generous guests from Darwin in Australia’s Northern Territories. This gave wonderful exposure for the EHE Rare Cancer Foundation Australia, as well as raising over $7,700 for EHE research.
Jane spoke at the event, telling people about EHE, her own story, and our Fundraising Month campaign. She also spoke about the research projects we are helping to deliver and those that we are trying to initiate. Jane was able to present a powerful and heartfelt request for support. This was particularly poignant as Darwin society lost one of its well know members to EHE in 2015.

EHERCC exceeds its EHE Fundraising April target of £10,000

The EHE Rare Cancer Charity and its supporters ran several events, supported around the country. Events include a car boot sale, a sponsored weight loss ‘slimathon’, launch of the #positivepants campaign, a quiz night and sponsored runs.

Jessie Jars

Jessie Jars was a campaign run in Q4 2016 by Jessie Hayman, where she simply asked friends, family, school friends and the public, to collect their small and unwanted coins up to the end of the year, and then donate them to EHE. This simple idea, thought up by a12 year-old daughter and driven on with energy over three months, raised an incredible £1,017.74. Congratulations to Jessie for an amazing campaign. We are already excited about the 2017 campaign!!


The EHE Foundation in the USA celebrated the 2017 April Fundraising Month by launching their second Virtual 5K event. People all over the USA registered to take part. For their registration fee they got a Virtual 5K t-shirt, tattoo and other goodies. Julie Rivers Wahl and LeeAnn Connor’s target was to beat the 2016 total of 576 participants, and they did it.
The total profit of 20175K had risen to $18,396.

Happy Birthday to the EHE Foundation

The EHE Foundation celebrated its second birthday on 24th February. Julie Rivers Wahl noted “that’s two years of learning, change, hard work, progress, and a lot of love and support!” But the job has only just started, so Julie issued ‘a call to arms’, asking people to help celebrate the EHE Foundation’s 2nd birthday by supporting its 2nd Annual EHE Virtual 5K Run/Walk! Last year the Foundation had over 500 participants taking part in its Virtual 5K, and raised over $16,000! They are hoping to reach and exceed those numbers this year! It is not too late to enroll, so please join the campaign if you can at:

In Q1 Julie Rivers Wahl introduced the EHE community to a wonderful group called #Run4. The group complete 4 challenges a year to raise money for different causes. Julie shared Delaney’s story and the group chose The EHE Foundation as their cause for March! The group’s 100 mile challenge sounds difficult, but participants can choose different ways to participate! Each participant pledges to give at least 10 cents ‘per mile’ which adds up to $10 for the month. Logs of miles completed are kept and posted daily, while medals are awarded for the finishers with prizes for the top performers. This wonderful group was very excited to raise money for EHE in #Run4JustLive. Julie’s whole family, along with many friends and other supporters, joined over 250 people who signed up for the challenge.
The spirit of #Run4 group is well demonstarted by one fishing supporter, David Petrisko, who has no direct link to EHE, but whom was so moved by Delaney’s story, he went out on the first day of the challenge and got the “Just Live” tattoo, complete with fishing hook! We thank everybody involved with #Run4 for their wonderful support, and for incredibly raising over $11,000 for EHE research.




November 2016

For the third year running, Julie Rivers Wahl and her family held their annual Team Laney t-shirt and hoody campaign to raise awareness of EHE and funding for critical research. The campaign was particularly poignant as it coincided with Delaney discovering from her scan results that there had been some progress with her EHE. In their normal manner, however, Team Laney were not blown off course and the campaign raised a huge $6,024. Team Laney have once again become Team Awesome, an inspiration to us all.

During December Joni Cherbinis Baptiste launched a fundraising campaign to remember her beloved Randy who died from EHE. Joni wrote “He was the light of my life and I will never forget the love and happiness that he brought to my world. When he was diagnosed with EHE it turned our world upside down. He was so brave and never gave up until he was forced to. But through it all, he not only fought for himself but he fought for the others who suffered from this horrible cancer. I promised him that I would keep up the fight and continue to support EHE Research. Please donate. No amount is too small. Thank you. Joni”
We are deeply grateful to Joni for staying with our battle, and for her drive and energy in delivering on her promise to Randy. It is with support of people like Joni that we will, one day, defeat EHE. We know that Randy would have been very proud of her.



Angela Osborn lost her brother, Brian, to EHE. Last year Angela organised her first annual poker night in memory of Brian and to raise funds for EHE research. It was a great success. So Angela decide to repeat the event in late October.
“We had our 2nd annual poker tournament to raise money for EHE in memory of my brother. We raised close to $10,000!!!! We love you and miss you Brian”.
We are so grateful to Angela for staying with the EHE battle, and know that Brian, seen here, would be so proud of what she has achieved.




September 2016

On 17th of September Colleen Afanassiev posted a simple message to say that the Bock Foundation had raised a staggering $10,000 for the EHE Foundation. Jane Gutkovich had driven all the way from New York to speak about EHE at the evening event! We were stunned at such a huge donation and thank Colleen and everybody at the Bock Foundation for joining our battle against EHE. With this sort of support, we can make a real difference in the fight against EHE, and hopefully bring forward the day when our motto, ‘JUST LIVE’, will be a reality and not an ambition.

LeeAnn Deacon Conner has them in tears


On the 21st September LeeAnn Deacon Conner (seen here with her 3-year-old son Grayson) posted the information that after 22 years in the Army, she had put on her dress uniform for the last time for her retirement ceremony. LeeAnn wrote “Not only did I use the platform to talk about EHE and all of you amazing people (and had the entire audience in tears), but I also raised over $1,000 (and counting) for The EHE Foundation. I requested “no gifts, please.” I told friends & family that I wanted to “pay it forward” with a donation to the EHE Foundation if they were so inclined. Just Live!” We want to thank LeeAnn for such a thoughtful gesture and to congratulate her on 22 years of commitment and dedication to her country.


One of the iconic EHE events held in 2015 was Julie Rivers Wahl’s first annual Day Out for EHE Research. On the 17th July, Julie and Team Laney held their second such event with fantastic support and participation. With a wonderful array of prizes, raffles and other activities, Team Laney raised an incredible $9,000. Despite the weather being poor, everybody had a fantastic time. We want to congratulate Team Laney for another stellar event and thank everybody who attended, helped and ultimately contributed to this great total.


July 2016

Diana Donohoo continues her support for EHE

Diana Donohoo’s desire to help raise funds for EHE started with a simple offer to provide crocheted ornaments. Now Diana has her own website and is helping to spread knowledge and understanding about EHE, as well as raising funds. We salute her drive and determination to make a difference, and for getting her ornaments on the Svengoolie show!


Devin O’Connor holds second annual golf tournament for Mandy

On 27th May Devin O’Connor held the Second Annual York EHE Foundation Golf Outing in memory of his beloved wife Mandy who lost her EHE battle in April 2015. The tournament was held at the Honey Run Golf Club in York, Pennsylvania. on

Mandy was clearly an amazing woman, and Devin is determined to continue to help our fight against EHE, as he promised Mandy. The Second York EHE Foundation Golf Outing raised over an amazing $21,000, for which we applaud Devin and extend our sincere thanks. We will of course continue to support him in all his efforts, and thank him and Mandy for their determination to beat this rare cancer.

May 2016

When Milly Simmie was diagnosed with EHE in 2015, she and her husband,

Alastair, quickly turned their mind to fund raising to help our cause. Alastair and a small group of close friends decided they wanted to do something significant, and ultimately landed on cycling the length of the UK. The Land’s End to John O’Groats ride is just over 1,000 miles, and Team Milly took it on in May. Riding on average over 100 miles per day, they completed the ride in 9 days as opposed to the 14 days taken by most. It was an absolutely fantastic effort, and at the end of June had raised an amazing £64,176 through Milly and Alastair’s Justgiving page. The ride included one section ridden ‘in the buff’, a last day challenge to raise additional funds. We salute this extraordinary achievement,




April Fundraising Month

EHE Foundation launches Virtual 5K

April 2016

The US EHE Foundation launched its Virtual 5K run/walk challenge where people were asked to register for $25 to take part wherever they could. Not only does the $25 go to EHE research, but each participant will receive a ‘goodie bag’, including their EHE t-shirt and other merchandise. The virtual nature of the event was perfect for such a widely spread group. Julie Rivers Wahl has spear-headed this campaign and we salute her for yet another barnstorming success.The USA had patient and support groups from around the country joining the US Virtual 5K. The final event saw 545 people take part, raising $15,363 for EHE research.

Of course the success is due also to people taking up the challenge. We want to thank Ty Peterson and family, Heidi Tolton Chatterton (5K events in Seattle, South Carolina and Anchorage), Team Laney (5K events in Virginia, Upper Michigan and Pentagon), Katherine Czyzewski, Katie Sterling, Elizabeth & Carl Dickson, and Connie & Lindsey Williams, all of whom have taken up the 5K event challenge with their supporters.
But there are also people taking part in ones and twos and small groups. They are equally important and we send them our thanks also.


5K virtual events in the USA

In the UK, the same 5K event led to multiple groups around the country participating in their own runs/walks. the UK raised £15,800 from its April events







Australia launched its fundraising month with a cocktail reception in Darwin, organised by Jane Biddlecombe, EHE patient and Director of the EHE Rare Cancer Foundation Australia. There was a fantastic turn out, great support, dancing and laughter, and of course some serious fund raising. Jane raised an amazing A$19,700 during the evening. We congratulate her on a wonderful effort, and thank all her guests for their extraordinary generosity.








Charity Poker Tournament is a winning hand!!

On 27th January 2016, Tine Ilena and Soris Camacho Garcia staged their first Texas Hold Em Charity Poker Tournament at the Mardi Gras Casino. Like all new events, Tine and Soris were not sure what to expect. So they were stunned when the turn out and support enabled them to raise over $3,600 for EHE research on the evening. And some supporters donated directly to Dr Rubin’s research page, meaning that the total funds contributed would have been greater still. All who were there agreed it was a great evening. Tine and Soris want to say a special thank you to Jonathan Carrillo and Ricky Buoni for making it all happen, and of course to all their supporters. We want to say a huge thank you too, for both the event and the wonderful ‘Fight Song’ video.

Devin O’Connor remembers Mandy with love and laughter

On the 30th January Devin O’Connor’s “Fighting with Laughter” comedy evening took place at the Gotham Comedy Club in New York. The monies raised were split between The EHE Foundation and the Four Diamonds Fund, Penn State University’s crusade against children’s cancer.


All those present agreed that it was a fabulous and very funny evening, with Devin’s own 10 minute set a centre piece of the evening. Once again Devin had done his beloved Mandy proud with an exceptional event that also raised invaluable funding for EHE research, raising $1,250 for EHE. We salute Devin for his continued commitment to the fight against EHE. Thank you Devin, and also a huge thanks to Devin’s cousin Meg McDevitt who was like a sister to Mandy and who organized the event.

Sister charities each launch EHE April Fundraising Month campaigns

April 2016 was set last year as our first worldwide EHE Fundraising Month. Our three EHE sister foundations all focused on launching their respective EHE April Fundraising campaigns through Q1. As we move into April the combined programmes across the globe looks very exciting indeed.

On 21st March Julie shared with the Facebook group an email received from Karen Wyman, Development Officer at the Cleveland Clinic. It was in response to amazing outcome of our efforts to raise money for Dr. Rubin.
Karen wrote:

“For a Cleveland Clinic leadership meeting, I plan to feature your group’s incredible success at fundraising for Dr. Rubin’s EHE research, world-wide!”