There are currently two parent/caregiver-friendly neuroblastoma-focused conferences that occur with regularity - the NMTRC consortium symposium and the CNCF parent and medical conference. Both are unique but complementary with one another, and active parents/caregivers/advocates are encouraged to attend one or both of them whenever possible.
Latest News from Max's Ring of Fire
Just the Facts, Please
What: Lemonade Stand
Where: Solana Highlands Elementary School, 3520 Long Run Dr San Diego, CA 92130 (map below)
When: February 24th, 2013 from 9:30am - 12:00pm
The Whole Scoop (er, Slice...)
Solana Beach Presbyterian Church has designated Max’s Ring of Fire as one of the sites for the church’s annual Community Serve Day. Church members along with special “guests” from the San Diego Star Wars Society will host a lemonade stand to raise money for research and treatments that benefit kids fighting cancer.
Since 2009, Solana Beach Presbyterian Church (SBPC) has designated a day where it closes its worship doors on Sunday, in lieu of serving the community through service projects up and down the coast. One of the 150 projects the church has identified is a Lemonade Stand to benefit Max’s Ring of Fire.
“SBPC’s Community Serve Day is one of the most meaningful activities we do as members of our church,” says Melissa Mikulak, Max’s mom. “It’s an opportunity to work alongside our friends and neighbors, and to be able to serve others in our communities and beyond.”
In addition to being able to help support a great cause by making a donation for a cup of lemonade or home baked goodies, the San Diego Star Wars Society will be on hand for photo opportunities, and you may even be able to spar with Darth Vader, or direct traffic with a few Storm Troopers. The San Diego Star Wars Society takes great pride in supporting non-profits that support children’s causes.
Max's Ring of Fire (MROF) is gearing up for its highly anticipated annual Touch A Truck fundraiser, which will take place from 10AM – 3PM on September 29, 2012 at Qualcomm Stadium. The 4th annual event is California’s largest kid-friendly car show – offering families a hands-on experience with the biggest, fastest and loudest motor vehicles that are guaranteed to make young hearts race. The fun-filled extravaganza will also offer military displays, Sea World and Star Wars characters, slot car races, live music, food trucks, face painting and much more! Touch A Truck (TAT) San Diego is presented by Max’s Ring of Fire, a local kids cancer fundraising and advocacy group, and 100 percent of the event proceeds will be used to support childhood cancer research and clinical trials.
Did you know that when Max was treated with chemotherapy, many of the drugs that he was administered were first developed in the 50's and 60's? And while some of them were effective, there was a tremendous cost to their benefit, since the drugs were extremely toxic and only effective in large doses. This is true across all childhood cancers - the "wonder drugs" available to adults are, sadly, largely unavailable to children. And little effort is going in to developing new drugs for kids fighting cancer.
The Creating Hope Act, designed to address this drug development imbalance, was introduced in the House on September 23 to great success. There are now 86 sponsors and a lot of momentum. The goal is to get to 100 sponsors by December 8!
How does the Creating Hope Act work? It provides private market incentives for development of drugs for pediatric rare diseases through the extension of the priority review voucher program to children with rare diseases. The Act is cost neutral – it does not require any appropriation (ie, new funding). It is a freebie!
In San Diego, two Congressional Representatives have already signed on to co-sponsor the Creating Hope Act: Brian Bilbray (50th) and Bob Filner (51st) - thank you!
Representatives Darrell Issa (49th), Duncan Hunter (52nd), and Susan Davis (53rd) have not yet indicated their support of this cost neutral, ground-breaking legislation.
Here's what we are asking you to do:
(1) If you're unsure if you are in the 49th, 52nd or 53rd district, check out this San Diego county Congressional District map.
(2) If you are in the 49th/52nd/53rd Congressional districts, click here to fill out a letter and have it sent directly to your Congressional Representative. You do not need to be a parent of a child affected by cancer, or even know someone personally affected by childhood cancer. All you have to be is someone who thinks that children deserve to receive better, less-toxic drugs just like adults.
It only take a few minutes to do this, and hearing from constituents is a very effective way that Congress decides which bills it supports, and which it doesn't. If you are interested in doing more, including calling the legislative assistant who oversees health policy matters for Representatives Issa, Hunter or Davis, please contact us and we'll follow up with you immediately.
Thank you for your help!
Last year, we took the plunge and decided to test having a fundraising run/walk in September, which is Childhood Cancer Awareness Month. Our goals were multiple: 1 - to use the event to raise awareness, as there aren't a lot of childhood cancer-focused events in San Diego during that month, surprisingly; 2 - to raise money, which it did - $10,000;3 - to provide an opportunity for our community to get involved and come together under a banner of doing good for kids and having fun, two things that Max believed in :)
So MAX RUN was born. Thanks to the hard work of Sole Warrior Sports' Christine Bowen, and the generosity of our sponsors including TENELEVEN, RoadRunner Sports, Aspire IRB, Charco Construction, Floaties Swim School and others, we were able to produce an event where $10,000 was raised and $10,000 went to childhood cancer research and clinical trials!
Moreover, the run itself was superbly produced - from all aspects. There was a mix of serious runners to recreational runners to first timers/walkers. Inspirational signs along the way helped spur the participants forward, while tasty treats and great music welcomed them as they crossed the finish line. Along with Ronald McDonald and Storm Troopers from the San Diego Star Wars Society, who actually ran/walked the 1-mile fun run with the families (big shoes/laser blasters and all!), it made for a unique event that captured the fun of childhood, all for a good cause.
It was a slam dunk to do MAX RUN II. However, we came up with another goal that we wanted to accomplish with the run - to start collaborating with other childhood cancer organizations and band together on an event like MAX RUN. The reason is simple: more impact. Instead of having our run in September and another foundation's run in November, why not combine our efforts into one big run? Alex's Lemonade Stand Foundation (ALSF) doesn't need an introduction to most of the people familiar with Max's Ring of Fire. Alex(andra) Scott lived a courageous 8 years and passed away from neuroblastoma (same as Max) in 2004, the year he was diagnosed at age 3. Jay and Liz, Alex's parents, have simply done an amazing job taking what Alex started and making ALSF one of the largest childhood cancer foundations in the country. Jay is also a really good guy, and 100% for the cause of eradicating childhood cancer, and 0% for worrying about who gets the credit.
Earlier this year, Jay and I (Andy) talked and decided it was worth giving it a shot - to work together and not only make what we started last year into a bigger event, but to also show the childhood cancer community that it is possible to work together on fundraising events. 1+1=3 in other words.
So, MAX RUN II has officially become Max's Ring of Fire Lemon Run, or MROF LEMON RUN. And this year, instead of a 5K "out and back" it will be a 4.6 mile loop - the 4.6 symbolic of the 46 children diagnosed with cancer every weekday. Of course, there will be a family/stroller-friendly 1 mile fun run/walk as well. Along with great prizes for kids and adults.
ALSF is handling most of the logistics and event planning, and MROF is going to promote the heck out of the event locally, garner volunteers and try to rope in some sponsors. We hope you can join us and participate as a participant, a volunteer, a sponsor, or mabye all three! Here's what we need:
1 - Runners/Walkers Sign-up and spread the word! ALSF has a great website for signing up and getting your friends, family and co-workers to support your run.
2 - Sponsors We need to pay for things like signage, banners, snacks and drinks, timing system, etc. This is a great community event. We're planning on at least doubling the size from last year (to 600). Email email@example.com or firstname.lastname@example.org if interested.
3 - Volunteers Both for the day-of the event as well as to "own" certain tasks (like water stations, or balloon arch, or food...). Email email@example.com or firstname.lastname@example.org if interested.
Thanks for reading this far and hope to see you at Lake Miramar on September 25!!
Andy & Melissa, Max's parents and founders of Max's Ring of Fire
Touch A Truck 2011, like Max's Ring of Fire itself, is run by a 100% volunteer, unpaid staff. That allows for 100% of the money we raise to go directly to support cutting-edge research and treatment studies for kids battling cancer.
The following is a post that appeared on People Against Childhood Cancer or PAC2. PAC2 is an online community started in 2009 by Bob Piniewski, whose son AJ was diagnosed with Burkitt's lymphoma and admitted to TX Children's Hospital on Fathers Day 2007. He fought bravely, elegantly and continually until January 5, 2008 when he passed away. Bob has graciously given permission to re-post his excellent summary of the Pediatic Cancer Caucus Briefing that was held Sept. 16, 2010.
First-ever 5K road race and 1 Mile Fun Run to raise funds for pediatric cancer research
Somehow, the holidays have turned into a season of stress, traffic jams, and shopping lists.
And when it's all over, many of us are left with presents to return, looming debt that will take months to pay off, and this empty feeling of missed purpose. Is this what we really want?
We like gifts. Our kids and spouses really like gifts. But consider this: America spends an average of $450 billion a year every holiday season. What if some of that money that we spend on gifts we don't really want and don't really need, what if that money also went straight to cutting-edge research and clinical trials for kids battling cancer (like neuroblastoma) for which they have no current hope for a cure?
You can find great gifts and support pediatric cancer research and clinical trials that take place right here in San Diego but also around the country, when you visit and place a bid for an item at MaxsGarageSale.com. It's an eBay Giving Works program that we are a part of, and the concept is simple. Bid on an item, and 100% of the winning bid goes to Max's Ring of Fire, Inc., and 100% of the income we receive from donations goes to fund research and clinical trials. Not a single penny that Max's Ring of Fire collects is spent on marketing, web hosting, salaries, travel, meetings, cost of fundraisers, etc. eBay allows for anywhere from 10-100% of the final winning bid to go to the charity but all the items at Max's Garage Sale were donated to Max's Ring of Fire, and so we can control the percentage, and that percentage is 100%.
Here's just an example of what's up for auction right now.
- Lunch for 4 at Pamplemousse Grille in Del Mar
- Famous Cedros Gardens Gift Certificate in Solana Beach
- San Diego Air and Space Museum - Family 4 Pack
- New Childrens Museum 4 Pack tickets
- Dinner Wild Note Cafe or Pacific Coast Grill and Concert at world famous BellyUp Tavern
- Barona Resort and Casino hotel/golf package
Of course, we'll be adding more items too. The auction is going to run through the end of year, give or take a few days. Then, if this proves to be a successful way to raise money, we'll maybe do a special Valentine's Day auction.
One more thing.. if you have something you'd like to sell on eBay, you can simply list it yourself and designate Max's Ring of Fire as the beneficiary.
Happy Thanksgiving everyone!
Many times the patient population is the largest generator and repository of data about a particular disease or disorder, and so it only makes sense that these "everyday scientists" working to save their own or a loved ones life be given the proper mechanism to publish their findings. I look forward to it's launch.
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
Another fantastic article in the Carmel Valley News highlighting the work that continues in the fight against neuroblastoma, and not only in San Diego, not only in Vermont, but across the country. Parents both working together and on their own are doing amazing things, including the Band of Parents, Ishan Gala Foundation, Friends of Will, and of course my old home, Magic Water, which continues on (as it should) despite my leaving to focus on Max's Ring of Fire.