Each year, the NMTRC (Neuroblastoma & Medulloblastoma Translational Research Consortium – nmtrc.org) holds a conference discussing the advances made in neuroblastoma research in the past year, and the direction their group is focusing on for the future. This is our 4th year attending (we also wrote about the 2012 and 2013 events).
This year, over 120 physicians, researchers, parents, and non-profit managers gathered in Grand Rapids, Michigan as a powerhouse of focus on curing neuroblastoma. The discussions this year revolve around personalized antibody treatment, sequencing and molecularly guided therapy, and preventing neuroblastoma relapse.
A powerful opening from Jude Sibley began the conference. Her amazing daughter, Lily-Mae, was one of 7 kids in Ireland who will get neuroblastoma each year. Irish hospitals have no clinical trials for neuroblastoma, and when she was diagnosed the doctors told Jude her daughter had 3-5 weeks to live. That was in 2012, and today Lily-Mae is still dancing with her family. Jude and Lily-Mae’s dad Leighton found the DFMO trial being ran by the NMRTC, which has incredibly promising results in preventing relapse, and travel from Ireland to Michigan every 3 months to participate. “Our kids need to get on with the business of living. It is us who worry,” said Jude. With a current 70% chance of relapse after neuroblastoma remission, and no cure for relapse, preventing relapse is a huge win.
The symposium has a wealth of medical minds present from all over the country. Lynne P. Yao, MD, the Associate Director, Office of New Drugs, Pediatric and Maternal Health Staff for the FDA joined us via WebEx, and Greg Reaman, MD, Associate Director of Oncology Sciences with the FDA also spoke, and are excited about what the NMTRC is doing. You can download the full program here (pdf).
Dr Giselle Sholler, chair of the NMTRC, shared results of the DFMO trial Because of Ezra is helping to fund. The results are extremely promising, and will be publicly available soon.
Conferences like the NMTRC Symposium are great for a variety of reasons. As parents of a child who died of neuroblastoma, Robyn and I find a great value in spending time with other parents who’ve shared our experiences in some way. There is a common bond which allows us to laugh and cry easily while talking about our children and cancer. The researchers at the conference are warm and passionate, discussing new ideas and the details of current studies at length both with parents and physicians. Many innovative ideas spring from the conversations held over lunch, dinner, and throughout the day’s presentations.
There’s still another day and a half of the conference left. August Calhoun, the VP/GM of Dell Healthcare and Life Sciences will be talking about Dell’s vision for the future of medicine. Dell has been an amazing supporter of childhood cancer research and the NMTRC as well.
We’re motivated to continue toward a cure for neuroblastoma. The annual growth in this conference, along with other neuroblastoma-focused conferences, is powerful to see, and gives us so much hope. We can beat this, together. Thanks for all your support.Read more
This past weekend we were in Grand Rapids, Michigan filming the story of an incredibly cute Irish neuroblastoma warrior named Lily Mae (look for that soon – and thank you for letting us share your story, Lily Mae and family!). Temperatures were in the single digits, and everyone was freezing.
As I watched Lily Mae dance around, singing her heart out no matter what she was doing, I couldn’t help but think of Ezra. He loved to dance – and I pictured the two of them hanging out by the fireplace she was playing by, or building a snowman together (the snow was so powdery it never would have worked).
Lily Mae and her family fly 3500 miles every few months to be treated by a promising drug called DFMO, which has shown incredible results in preventing neuroblastoma relapse. Neuroblastoma is hard enough to treat up front – and over 60% of kids relapse. There’s no cure for relapse. If we can prevent relapse, so many lives would be saved.
We began funding this DFMO research in 2012, when we gave $100,000 to various research focuses. Through your help in 2013, we were able to fund over $150,000 of research, giving children and families hope today – and better quality of life in treatment. DFMO is a pill which can be dissolved in lemonade, and has no side effects we’ve seen. The results so far have been astounding. This trial completes in 2014, and is being done by the NMTRC, chaired by Dr Giselle Sholler. We are also supporting NANT, led by Dr Robert Seeger, and are proud to have funded them opening their recent trial location, at Children’s Hospital Colorado.
When you give to Because of Ezra, whether by attending our events, donating online, spreading the word, or however you can help – you are making a difference. Over 90% of our donations go directly into research and awareness. We remember Ezra constantly, and we hold a banner high for each child fighting neuroblastoma today. We spend time with the families who are where we were – in hospitals, clinics, and Ronald McDonald houses across the country and world. With your help, we can change the next family’s story for the better. We can find a cure, and we are so incredibly grateful for your continued support of what we’re doing.
Thank you so much,
Kyle and Robyn Matthews, Derek Pupello, Marissa Devins, and Erica CopelandRead more
Because of Ezra Board of Directors
The NMTRC (Neuroblastoma & Medulloblastoma Translational Research Consortium) is a group of 18 universities and children’s hospitals headquartered in Grand Rapids, MI which offer a nationwide network of childhood cancer clinical trials. The group is chaired by Dr Giselle Sholler. These trials are based on the research from a group of closely collaborating investigators who are linked with laboratory programs developing novel therapies for high-risk neuroblastoma and medulloblastoma.
They’re one of the groups Because of Ezra supports financially under our mission of funding relevant, patient-affecting research into a cure for neuroblastoma. The NMTRC hosts an annual symposium, where the members meet to discuss the previous year’s work and future directions. The 2013 symposium was this past Monday and Tuesday (May 6-7) at the Wyndham hotel in Lake Buena Vista, Orlando, FL. Video will be on YouTube within the next week or two (and we’ll mention when it is), but we wanted to share some of the experiences here first. You can watch the entire conference on YouTube if you’d like, separated by discussion.
The NMTRC is unique in the level of community between the physicians, scientists, and families (both in treatment, out of treatment, and those running foundations). We largely attend the same presentations, dinners, and have structured open conversations about the work being done. The depth of collaboration is refreshing and inspiring. When you have parents whose children are ON a trial participating in the same conversations as the scientists who proposed the trial, the organizations funding it, and the physicians carrying them out… it’s an incredibly effective synergy.
The work being done is truly remarkable – the first ever FDA approved personalized medicine trial for pediatric cancer, preventative trials to reduce the rate of relapse (in this case with a drug called DFMO), immunotherapy, and more. One of the most interesting presentations was by David Krag, MD, who is the SD Ireland Professor of Surgery at the University of Vermont (yes, he said, surgeons do science, too!). Titled Personalized Antibody – Timeline to Clinical Impact, Dr Krag discussed an exciting method of harnessing the body’s own immune system to create personalized antibodies specifically for an individual’s neuroblastoma tumor. It should be going to trial this year.
Personalized medicine is a concept at the core of what the NMTRC is doing. It has the huge benefit of being much less toxic (and much more targeted) than the standard chemotherapy regimens currently prescribed for neuroblastoma. These current standards are not effective (survival rates for stage 4 neuroblastoma hover at 40%, with relapsed neuroblastoma still having no known cure), and include rounds of treatment with what physicians call “kitchen sink chemo.” Partnerships between the NMTRC and the Translational Genomics Research Institue and Dell have pushed forward much of this work by analyzing individual patient’s tumors to find treatment options specific to their disease.
We got to spend some great time with non-profits also working toward a cure for neuroblastoma – and families who are battling it now. Some of the children represented included Will Lacey, Melina Riniolo, Brooke Hester, Saoirse Fitzgerald, Abigail Goss, Daxton Blanford, Chase Ringler - and there were even more. These children are each reasons we fight, and reasons why continuing the battle against neuroblastoma is so very important. Neuroblastoma CAN and WILL be beaten – and it is going to take time, passion, awareness, and funding. We are so, so, so, so grateful to have your support in making this a reality.Read more
What a great weekend running for Ezra and all his fellow neuroblastoma fighters! This was our third year running the Publix Gasparilla Distance Classic, and it was so good to see everyone out there!
A huge thank you to all the runners, walkers, and strollers who came out and ran with us, raising nearly $9,000 to benefit research into a cure for neuroblastoma. You guys were amazing, and we’re so grateful to have you all on our team. A special thanks to our top fundraisers, Dave and Deb Matthews and Abigail Bonham – both with $1,000 or more raised!
It was a great day for running – in the 80s but slightly overcast the whole time. We can’t wait to see you all out there again next year, with even more red-shirted BoE supporters fighting pediatric cancer!
Today marks the day we’ve been without Ezra as long as we were with him. 800 days from the day he died, after living exactly 800 days. It’s a strange day for us.
We thought it would be fitting to do Because of Ezra’s giving for 2012 on this day – this is only something we could have done Because of Ezra. So this morning, Robyn and I presented a gift from Because of Ezra in the amount of $75,000 to the neuroblastoma work being done by Dr Giselle Sholler at the Van Andel Institute in Grand Rapids, Michigan. Our gift was matched by an incredibly generous local family trust, meaning the total gift will be $150,000. This is specifically to fund a trial using DFMO, an investigational new drug which prevents relapse of neuroblastoma. We personally know many of the children on this trial, and it’s a drug which has no significant side effects, and so far has been extremely effective. 50% of children who fight neuroblastoma to the point of no evidence of disease relapse – and there is no current cure for relapsed nb. Preventing relapse would be a huge accomplishment. Dr. Giselle Sholler received the gift along with the CEO of the Van Andel Institute, David Van Andel.
We are honored to be able to contribute to work which is making a huge difference in children’s lives who are fighting the disease Ezra died of. In all their names, and from the bottom of Robyn and I’s hearts – thank YOU for supporting what we’re doing Because of Ezra. We couldn’t have done this today without all your support raising awareness and funds. Our board members Marissa Devins, Erica Copeland, and Derek Pupello (and their spouses) all deserve a huge thank you as well – they are incredible people who make doing all this easier, and we are so grateful to have them on board. They are also amazing friends.
Late in December, we also supported the work being done by Dr Robert Seeger and the team at NANT in Los Angeles, with a $25,000 gift. NANT is doing some great work, including a study on the biology of neuroblastoma, and we’re honored to support them as well.
Through your help Because of Ezra was able to give $100,000 in 2012 to researchers, physicians, and scientists making a difference in survival today for children fighting neuroblastoma. Thank you, thank you, thank you.
Robyn mentioned raising awareness and giving toward a cure is a way for her to continue being Ezra’s mother – to keep honoring his name, to keep fighting the fight he started for us. We know the hurt neuroblastoma brings to a family, and to be able to take that away from someone in Ezra’s name has so much meaning for us.
We look forward to doing even more to cure this horrible disease in 2013 – and telling more people about the need, the fight, and the ways to cure this. It is possible, and with people like you helping us, we know we can do this.
Two years ago today we lost our first-born son, Ezra David Matthews. After exactly 800 days of life, he died of neuroblastoma. Our fight is one he started for us, and we won’t stop until this cancer is cured.
In Ezra’s name and memory, we are so proud today to launch our first social awareness campaign – 800 days.
Each month, we’ll be sharing a new story of a child fighting neuroblastoma. We are amazed at the strength of the families we meet during this project, and feel so honored to be able to share their stories with you. We do hope you’ll spread the word – awareness alone really makes a big impact. These kids and families are beautiful, and being able to see and share their fight is so inspiring.
We are incredibly grateful to have Mindy Kaling championing the neuroblastoma cause as well! She is incredible and we are thrilled to have her. Thanks for your help, Mindy – it makes a difference.
If you haven’t yet checked out the project – please do take a look at 800days.org, and watch our latest video – of Grayson Dragon Hernandez. And share it with anyone who’ll listen! Catch us on Facebook, Twitter, or sign up for our email list to stay up to date on what we’re doing.
Big things keep on coming!Read more
Wow – what an evening we had last night! Our first annual Karaoke for Kids event went without a hitch at the SLS Hotel in Beverly Hills. Over 400 people showed up to enjoy the live-band karaoke, desserts sponsored by Cookie Casa, drinks, and great appetizers from the SLS Hotel food staff.
Through tickets, sponsorships, raffles, donations, and auctions, we raised $110,000 which will nearly all go directly to fund relevant research into neuroblastoma – making a difference for children fighting today.
The Karaoke for Kids event will be held every year in Beverly Hills – this is the first of many! We are making a difference – and we thank all of you so much for your support. Ezra has such a large piece of our hearts, and we will not stop fighting in his name until we’ve seen neuroblastoma cured. His 800 days of life motivate so many of us – we do this because of Ezra.
We’d like to give our huge thanks to so many people. We’re so grateful to our sponsors – who include United Talent Agency, HBO, CBS, FX, CollegeHumor.com, and Ziffren Brittenham, LLP. Our amazing board members Marissa and Erica deserve more thanks than we could possibly give – we love them. Their husbands Matt and Brad are also amazing and deserve big thanks. A special thank you goes to Nick Offerman (you probably know him as Ron Swanson on NBC’s Parks and Recreation – pic at the top of the post!) for donating his famous mustache to be auctioned off – and creating by hand a stunning wooden base which it is displayed on. Congrats to Philip Lord for winning that mustacheum at auction!
Thanks again for all of you guys’ help – we’re excited to keep raising awareness, funds, and finding a cure for neuroblastoma.
Oh – and we’d love for you check out our #nomorenb campaign! Please share it with your friends, put it on Facebook/Twitter/Pinterest… people need to hear these stories – and you guys make the difference.Read more
“My mustache and I are tickled pink to have the opportunity to help raise some funds for this great charity,” Offerman told Vulture via e-mail… Can’t make it to the auction in person? Send an email to email@example.com for info on how you might yet end up owning the Nick Offerman Mustachium.”Read more