Register Jan 2018 for TeamBrentWheels August 2018 PMC ride.
We are proud to be a part of the Pan-Massachusetts Challenge (PMC), the nation's original fundraising bike-a-thon. The PMC has contributed a whopping half billion dollars to fight cancer, the largest sum ever contributed to a charity by an athletic fundraising event. Donate to our cause - every single cent gets passed on to research. 100%!!!!
For TeamBrentWheels first PMC in 2005, we had nine riders. Brent wasn't cheering alongside hundreds of kids @ Da Hedge; he was in the hospital having his 2nd bone marrow transplant. Time has flown by. TBW has had 145 different riders since then, averaging three PMCs each, including five families of neuroblastoma survivors. We’ve hitchhiked to the start line, crashed some bikes, doled out advice to Tour de France champions, climbed the Hollands Alps, had more than a few Harpoons and shared a lot of laughs.
The 192 miles of the PMC are filled with people who line the streets with families and friends, playing music, banging on pots, spraying riders with hoses, and holding signs saying, “I am 11 now because of you.” and “My heart beats because of your feet.” Their “Thank You” signs really make you understand that what we do makes a difference. Last year we witnessed a father riding a tandem bike by himself. The seat behind him was empty in honor of his son, lost to cancer. Then there are the people who stand alone at the side of the road, with nobody else in sight, clapping for hours. That says volumes about how meaningful this event is. Cancer doesn’t have a chance – each rider, donor and volunteer brings us Closer By the Mile…to a Cure.
The PMC will donate 100% of every rider-raised dollar directly to the cause. That means exactly what it sounds like – if someone gives $40 for the ride, all $40 goes exactly where it should be going – to life saving research to keep people from dying of cancer. Every single cent to the Dana-Farber Cancer Institute (DFCI).
Ian Murray, CEO/Co-founder, Vineyard Vines (TeamBrentWheels' PMC sponsor) says "We feel so honored to work with TeamBrent. It's amazing to see how they've brought the community together."
Billy Starr, Founder/Executive Director, The Pan-Massachusetts Challenge says "TeamBrent typifies how effective a motivated constituency can be when they work together toward a common goal. The team is a fundraising force that has galvanized a township in Connecticut."
Lisa Diller, Clinical Director of Pediatric Oncology, Dana-Farber/Children's Hospital; Professor of Pediatrics, Harvard Medical School says "I am inspired each year when I hear about TeamBrent helping my colleagues and me at the Dana-Farber Cancer Institute and Children's Hospital fight childhood cancer. Please know we appreciate all that you do!"
Roger Haney, Executive Director, TeamBrentWheels says "Being a part of TeamBrentWheels and the PMC is nothing short of amazing. The team is much more than just a group of folks coming together to fight a horrible disease - it has grown into a Big Family that rides hard, laughs harder, and sheds a tear or two. I will always look forward to the first weekend in August."
While overall PMC funds go towards fighting cancer in general at the Dana Farber, TeamBrent’s monies are targeted towards fighting neuroblastoma, the childhood cancer that Brent battled. We have partnered with Dr.Lisa Diller MD, clinical director and chief medical officer of Dana-Farber/Boston Children's Cancer and Blood Disorders Center and Suzanne Shusterman, Institute Physician and Assistant Professor of Pediatrics, Harvard Medical School to allocate our donations most effectively.
Neuroblastoma is a disease of young children which requires extremely aggressive therapies to cure. Just over half the children with high risk neuroblastoma are cured (a huge improvement from the 20% when we started 12 years ago, but horrible nonetheless).
We have realized that neuroblastoma is caused by different mutations in different children and thus needs a personalized program. If a patient relapses, we test the tumor to identify specific abnormalities & make specific treatment recommendations based on the genes. Because of this, we have multiple studies going on so we can attack the disease in different ways. We need to develop and study drugs that attack the abnormal gene’s effects on the tumor cells. Once we test them in patients who relapse, we can identify which patients will benefit before relapse even happens. Prior years funds have helped launch the personalized program and all the work in progress, which has helped improve the cure rate. We have found ways to cure certain types of neuroblastoma. But we haven’t figured out all of them YET.
This year’s funds will go to studies and trials to attack the disease from multiple angles: our neuroblastoma vaccine GVAX; other immunotherapy; targeting MYCN, ALK & TRK genes. The first $80,000 of this year’s funds will go to hire a full time neuroblastoma program manager to support the work being done, making sure that patients get access to all the relevant clinical trials and that biologic samples are collected to get an answer faster about how to make this treatment better for all patients.
Brent has been disease free for 11 years, but the fight goes on. This year’s team of 50 riders ride for our seven Pedal Partner neuroblastoma survivors – a combined 46 years neuroblastoma free!!!! living proof that your efforts make a difference.
We ride for Brent, 14 years old, 11 years neuroblastoma free; Sean, 13 years old, 12 years Neuroblastoma free; Maggie, 10 years old, 9 years neuroblastoma free; Max, 11 years old, 8 years neuroblastoma free; Mason, 5 years old, almost 3 ½ years neuroblastoma free, and Brady, 7 years old, almost three years neuroblastoma free.
That's the nuts and bolts of it - want to learn more? read on!!!!!
There is lots of excitement in oncology today about immune-based therapies, and neuroblastoma is no exception.
- We used the groundbreaking work at the Dana-Farber in melanoma to develop a GVAX vaccine trial. Regulatory issues delayed GVAX trial but we are about to submit to the IRB. No efficacy issues, just delays. Thank you to previous year’s riders which developed the GVAX vaccine so we can now test it in children. All DFCI patients who are new high risk, have disease after standard therapy, or relapse will be eligible.
- For those of you curious how GVAX works, it uses patients’ own immune system to fight cancer. It takes patient’s cancer cells, kills them with radiation, modifies them to act like a vaccine usually does (making the body immune to similar cells), and then injects them back into the patient.
- Neuroblastoma is one of only a few solid tumors in which antibodies directed against the tumor cells have been found to work to decrease the risk of recurrence. We are now developing a study for relapsed neuroblastoma combining antibody therapy with chemotherapy at the same time. In addition, we recently opened a study using anti-CD56, a new antibody that targets a different protein on neuroblastoma.
- A new class of drugs – immune checkpoint inhibitors – take the brakes off the immune system to get it to fight cancer. This kind of approach has resulted in remissions in adult patients with metastatic melanoma (like Jimmy Carter), and there is tremendous excitement about the potential of this approach. We have two open studies of these immune checkpoint inhibitors for kids with relapsed neuroblastoma.
MYCN- directed therapy
MYCN is an oncogene (a gene that when overexpressed works to promote growth of cancer) and is present in a large proportion of neuroblastomas.
- This Fall we hope to open a phase I trial of one of several bromodomain inhibitors (drugs that interfere with the growth pathways driven by the MYCN gene).
- We are watching a new adult drug targeting MYCN that enters trials by year end, so we may follow with pediatrics.
The ALK gene is abnormal in 10-15% of neuroblastomas, which may respond to ALK inhibitors. What’s great about these drugs is that they have efficacy in adult cancers, so drug companies will continue to develop them However, the market in pediatrics is so small that the companies won’t support clinical trials. That’s where PMC $ come in.
- We are in the midst of an open study of a second generation ALK inhibitor.
- Will soon open a study of a third generation ALK inhibitor.
- We are also developing an antibody that binds to ALK (making ALK a potential target for treatment in the other 85-90% of patients, the non-mutant ALK patients).
We just opened a phase I study of a new TRK (another growth pathway in neuroblastoma) inhibitor and are waiting for final approval on a second TRK inhibitor study.
Our MIBG treatment program continues to be quite active thanks to the TB funded MIBG radiotherapy room at Boston Children's Hospital. We are treating both relapsed and some newly diagnosed patients. This room has been essential. Thank you team.
- We have an open trial testing MIBG in combination with chemotherapy for relapsed patients. One of our faculty, Dr. Dubois, is the principal of this national consortium study.
- There is going to be a COG phase III study that randomized newly diagnosed patients to standard therapy or standard therapy with MIBG which will make our program even more active. Dr. Dubois is the Vice-Chair of that study, and brings extensive experience in MIBG therapy.
SURVIVORSHIP AND QUALITY OF LIFE
We are also really, really excited that our national survivor study is about to open. Because of people like you and your donors, we are fortunate enough to have more and more survivors, and now we need to better understand what long term side effects they are having and how we can prevent them.
Don't feel like riding a bike 192 miles? Head on over to Mo's Wine & Spirits in Fairfield & pick up a bottle of 192 Red Wine Blend, crafted from premium Cabernet Sauvignon, Cabernet Franc and Merlot varietals from prime vineyards in Northern California. The intense flavors of black cherry and berry, with hints of chocolate and vanilla, come together for a full, lingering finish. It's just $14.99 and a portion goes right back to the PMC. Enjoy knowing that with every sip you are helping fight cancer!