In honor of recent NB angel Erin Buenger and her wonderful mom Vickie, today's post title is a verb. Mosey over to Erin's blog (appropriately re-titled, "Let's Do It!" after her passing) and read Vickie's latest post about Luke Skywalker and his mission in life.

Just a quick last-minute post about today's Touch A Truck fundraiser that we're putting on to raise money for neuroblastoma research. We've been doing most of our marketing for the event through local news and Facebook, not so much this blog, as so many of its readers are not local. However, for the 10-15 of you in America that are not on Facebook yet, if you're in San Diego today and looking for something to do from 12-3pm, come on over to Canyon Crest Academy in the eastern portion of Carmel Valley just north of the 56 for Touch A Truck. This is a family-friendly event that will have construction trucks, garbage trucks, race trucks, race cars, etc, that kids can touch, climb on, climb in, honk, and generally play on and around. We'll even have a car that kids can paint themselves! Our goal is to raise $10,000 from this event and checking last night we're well on our way with $2,500 in advance ticket sales/donations online already! 100% of the ticket money/donations goes to NB research. Melissa and I have footed the bill for all the rentals/permits/marketing expenses, or they are donated.

The weather today is still not cooperating but by 12 noon it should be somewhat less foggy. I can't tell you how much I hate this time of year in San Diego - its been overcast for the entire day by the beach for more than a week, and unlike other cities that come to mind (San Francisco, Portland, Seattle), San Diego does not wear the color gray well. Still, the purpose of why we are holding the event - honoring Max and raising $$ ofr NB research - doesn't diminish my joy and pride at all the work that Melissa and the legion of volunteers have done to make today happen. We will post an update later today or tomorrow after the event with pictures and a total amount that was raised.


Developments in Neuroblastoma Symposium

On Thursday (21st), I attended the Developments in Neuroblastoma Symposium at the University of Vermont. Present were about 120 parents, researchers, doctors and pharmaceutical industry representatives, as well as some medical students and nurses. It was beautiful weather in Burlington - 88 degrees was the high that day.

After the dean of the medical college opened the Symposium, Dr. Giselle Sholler welcomed everyone and then I spoke briefly for a few minutes. I spoke about Max, about the need for greater collaboration using the example in an email from a friend, Alessandra Blassina, who is an oncology research scientist at Pfizer in La Jolla.

Some highlights of the day’s presentations:
  • David Krag, MD, did a great presentation on phage display for neuroblastoma. Phage display is a method of creating patient tumor-specific antibodies (phage are viral particles that infect bacteria - bacteriophage - which then make antibodies for you who might know what that means) which can then be attached to another molecule like a neurosphere (white blood cell). The patient tumor-specific antibody then easily finds and attaches itself only to tumor cells, and the proximity of the neurosphere to the tumor cell enables the neurosphere to attack and kill the tumor cell. Nice. Simple. Elegant. Approximate time to clinical application: 2 years. Approximate cost to develop phage display in neuroblastoma to phase 1 clinical trial readiness: $250K. (Note that time and cost estimates for this research are my own based on my understanding of the issues involved and have not been reviewed by Dr. Krag. But I do believe them to be directionally accurate).
  • Giselle Sholler, MD, presented a lot of information:
    • Preclinical work on genomic analysis of patient samples for the development of the personalized clinical trial.
    • Identifying BTK as an important target of neuroblastoma tumor initiating cells which has led to preclinical work testing a BTK inhibitor.
    • TPI-287 trial that is currently open in Vermont – they recently just filled their first study cohort and should begin accruing for the 2nd cohort very soon. What is great about the TPI-287 trial design is that even though it’s a Phase I trial, she has designed it to be a multi-agent trial, but the first two rounds are single agent only, so the pharmaceutical company gets good toxicity and pharmacokinetics data, and then the additional adjuvant agent is added (Temodar). And though it’s a Phase I trial, like all smartly-designed trials for a rare disease like neuroblastoma, they collect efficacy data (ie, does it work?) in addition to the study’s main purpose which is to measure toxicity and establish an MTD (max. tolerated dose).
  • Craig Webb, PhD, showed how he is developing predictive models from tumor-derived molecular data that can systematically identify targeted treatments from existing pharmacopeia for metastatic and/or refractory neuroblastoma. The methodology and processes that he created form the basic underpinnings of a possible predictive or “personalized” clinical trial for 2nd-relapse/progression after relapse and refractory neuroblastoma patients.
  • Nai-Kong Cheung, MD, PhD, the keynote speaker from Memorial-Sloan Kettering Cancer Center in NYC and a noted neuroblastoma expert, presented a history of immunology and immunotherapy in neuroblastoma. While Cheung had no new data to present, it was good to hear his perspective and point-of-view on how MSK treats kids with its 3F8 immunotherapy treatment. In retrospect, I think it might have been good to give 3F8 a try on Max – I know some people reading this will cringe that I’m playing “coulda-shoulda-woulda” and that I should feel confident that we did all that we could and that we made all the right decisions regarding Max’s treatment. But until you’ve experienced what we have experienced, fighting neuroblastoma for the four years that Max did, you don’t get to make that call ;)
Afterwards, the parents present gathered for a few minutes alone with each other. Gilles Frydman, (founder of ACOR.org) whom I got to moderate the last panel of the day on Therapeutic Decision Making in Neuroblastoma, provided us with some helpful perspective on what other cancer groups have done to successfully move research forward quickly.

Overall, it was very good to see some of the newest ideas for how we might be able to find therapies that improve chances of survival for these kids while being less toxic to their little bodies. At the same time, while energized from being around "my people", I also came away depressed that my fight continues on behalf of kids I know, but whom aren't mine. Still, continuing is the only option for me. I can't think of a greater purpose than doing all that I can to defeat neuroblastoma.

I returned to San Diego on Friday. On Sunday, some of the medical students at UVM as well as Friends of Will ran teams in the Burlington Marathon to raise money for Dr. Sholler's program. In all, $30,000 was raised!


KUSI Interview for Touch-A-Truck

On Saturday morning, May 23, we were invited over to our very-local TV station KUSI to advertise Touch-A-Truck! Our friends, the Mouratoff's, set-up the interview through Dave Stahl the Car Guy and let us borrow their Nascar and their daughter, to do a super great segment on the morning news.

Borrowing the car isn't quite as simple as it seems. NASCAR's are... well... a bit loud and not street legal. So the Mouratoff's actually got up with the sun, had the car trailered over to KUSI, unloaded it in the parking lot, pushed it into the back of the lot for the segment, then did the reverse to get it back to the car's home. It was quite a bit of work. All I had to do was show up and remember facts about the fundraiser!

A big "thanks" to them and to Erin for being the NASCAR spokesperson.

In addition to being able to climb in and get your photo taken in this NASCAR, we've added a few more vehicles to the line-up:


Busy two weeks coming up

The next two weeks will be very busy indeed. Tomorrow, I fly to Vermont for the Developments in Neuroblastoma Research Symposium, where I am giving the welcome. I'll speak briefly about Max - reminding everyone in the audience the ultimate purpose of why we're all assembled in that one auditorium together - and then give a message about the power of collaboration and what can happen when parents get involved. It will be the first time I've had to speak about Max in front of a large audience since his death. I hope I hold it together. The symposium itself should be very good, with Nai-Kong Cheung from Memorial Sloan Kettering Cancer Center (MSKCC) the keynote speaker. Cheung and MSKCC developed an antibody therapy for use in neuroblastoma called 3F8 that uses mouse-derived antibodies to target a receptor on a neuroblastoma cell. When 3F8 is injected into the bloodstream, it travels through the body until it attaches to the marker GD2 that is present on all neuroblastoma cells. The attachment of 3F8 to a neuroblastoma cell signals the patient's own immune system (e.g. the white blood cells) to treat neuroblastoma cells as foreign. In other words, the 3F8 directs the patient's immune system, which ordinarily acts only to control infections, to attack neuroblastoma cells and kill them.

Max's doctor from Children's San Diego - Dr. Roberts - will be at the sumposium as well, as part of the new Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) that includes San Diego, St. Louis, MDAnderson (Houston) and Vermont hospitals. Also very exciting is that I got Gilles Frydman to moderate the final panel of the day, on therapeutic decision-making. Gilles is somewhat of a rock-star in the cancer/patient advocacy world. He started ACOR, which is one of the oldest online disease communities, and the largest online cancer community. ACOR is where NB parents connect online to share advice, provide support, and learn about new treatments.

Also great to hear is that many other parents and parent-foundations will be at the symposium, including parents from Ishan Gala Foundation, Friends of Will, Band of Parents, MagicWater, Grace Oughton Cancer Foundation, and others. It is through the combination of all our efforts that we will find a cure for neuroblastoma sooner. Just to let everyone know, these parents - myself included - take valuable vacation days from our day jobs, and spend our own personal money (not their foundation's), to attend events like the Vermont Symposium. 

I mention how money is used, as on the 31st of this month (Melis' birthday in case you're keeping track) is Max's Ring of Fire's first fundraiser called Touch A Truck.We hope to raise $10,000 for Dr. Sholler's neuroblastoma research program at UVM with this event. We're well on our way with over $1,000 in tickets already purchased, but still have a ways to go. If you are planning on going, it would be great if you buy your tickets in advance as this helps us know how many people will be coming. And if you're not coming, why not buy a ticket anyway? We're inviting all the families actively being treated at Children's Hospital San Diego free of charge, many who otherwise might not be able to afford the ticket price, so sponsor a family today if you can!

Max in Vermont at the ECHO Science Center, Jan 2007 during hopeful times.


Touch-A-Truck Confirmations

Check these out:
Del Mar Lifeguards truck & boat

2 Harley Trikes++

$25 per family
$15 per family for active military w/ ID
$25 per group in uniform: girl scout troops, boy scout dens, indian guide tribes

Buy your tickets online at
or at the entrance on the day of the event.
Cash or check only please at the event.

To download a flyer to help us spread the word about this awesome event, click here. Post it in your local coffee shop, community boards, pass it out at your school!
If you have a special vehicle that you would like to share with kids, please download our Participation form and return it ASAP. We would LoVe to have you participate!

The Party Game Truck

Winston Cup Nascar
Soccerball Bug
Also the Petco Mobile Grooming van + a dog; Rose Towing tow trucks; two school buses; fire engines; police car or two if everyone in Carmel Valley behaves; mini cooper.
More to come...


Max's Ring Of Fire May 2009 Update

An email newsletter was sent out last night to our small but growing number of people who have signed up to receive email updates from Max's Ring of Fire - to view the newsletter you may click here. If you'd like to get your updates on Max's Ring of Fire via email, you can sign up here. Otherwise, if you're a "fan" of us on Facebook you'll get updates there - and if you're on Facebook but not a fan of Max's Ring of Fire yet, here's the link for that too. And we'll continue to post updates on our progress with Max's Ring of Fire here on Max's blog. Thanks to everyone for all your support.



Sunday - May 31, 2009
Canyon Crest Academy in Carmel Valley
where Del Mar Hgts Rd meets Carmel Valley Rd
Put your imagination in gear and go! Join us for Max's Ring of Fire's 1st Annual
where kids get a chance to get behind the wheel and rub elbows with their hometown heroes. Come and climb on and explore dozens of your favorite vehicles including big rigs, fire engines, police cars and construction trucks.

Please join us for an awesome family-friendly afternoon while supporting our efforts to fund pediatric cancer research for neuroblastoma, the cancer that Max battled for four of his seven short years.

5951 Village Center Loop Road
San Diego, Ca 92130

$25 per family
$15 per family for active military w/ ID
$25 per group in uniform: girl scout troops, boy scout dens, indian guide tribes

Buy your tickets online at
or at the entrance on the day of the event.
Cash or check only please at the event.

To download a flyer to help us spread the word about this awesome event, click here. Post it in your local coffee shop, community boards, pass it out at your school!
If you have a special vehicle that you would like to share with kids, please download our Participation form and return it ASAP. We would LoVe to have you participate!

Special appearances by the

Stormtroopers? Jedi? Darth Vader? We never know who'll show up!