What an incredible night at the Seaport Hotel in Boston! The Gray Gala was such a fun event to attend, and a lot of much-needed money was raised for the National Brain Tumor Society. The decor was beautiful, the food was delicious and the live band was amazing. Anyone that left before the end of the night missed out on a fantastic dance party!
When we first got there, we all took some pictures in front of the official Gray Gala signs, grabbed a cocktail and browsed the silent auction items. There was a lot of variety in the silent auction items, showing how many different people and organizations contributed to the Gala. Unbeknownst to me, my husband bid on some items. We’re still waiting to find out if he won any of the items, but if he did, he is no longer allowed to complain about my online shopping habits!! After browsing the silent auction, we took our seats and were served dinner just before the speeches of the evening began.
The speakers at the event were incredible. Two speeches in particular really stood out to me.
David Arons, the NBTS CEO who spoke about the challenges the NBTS is facing with raising money and awareness. Although there have been improvements, there is still very little fundraising for brain tumor research. Brain cancer is one of the deadliest cancers there is. Below are some facts I pulled from braintumor.org:
- An estimated 700,000 Americans are living with a brain tumor, and there are over 130 different types of brain tumors.
- The average survival rate for all malignant brain tumor patients is 34.7%.
- For the most common form of primary malignant brain tumors, glioblastoma multiforme, the five-year relative survival rate is only 5.5%.
- Despite the amount of brain tumors, and their devastating prognosis, there have only been four new FDA approved drugs – and one device – developed to treat brain tumors in the past 30 years.
So why isn’t brain cancer getting more attention? Why aren’t we fighting to find a cure like we do for other cancers? Why do we hear about breast cancer, alzheimer’s and autism, but nothing about brain cancer? This is the question that plagues the brain tumor community, as most of us have a devastating prognosis and NEED a cure. You could see and feel the frustration from David Arons as he spoke about this challenge.
The most memorable and emotional speech of the evening came from Christine Suau, Devin Suau’s mother.
The Suau Family
Have you heard of the hashtag #whynotdevin? His incredibly strong mother, Christine, told Devin’s story at the Gala, and you could feel the raw emotion in her voice. Devin was a 6-year old boy from Framingham, MA who sadly passed away in October of last year from Diffuse Intrinsic Pontine Glioma (DIPG). DIPG affects children almost exclusively, most between the ages of 4-11. With DIPG, there is no effective treatment and no chance of survival. Only 10% of children with DIPG survive for 2 years following their diagnosis, and less than 1% survive for 5 years. When Devin’s parents learned this, they started the hashtag #whynotdevin. Why couldn’t Devin be the first to beat it?
The #whynotdevin hashtag quickly took off and brought tons of awareness to DIPG, and Devin’s parents are still bringing awareness to this awful disease through their foundation in memory of Devin. During the speeches, I was shocked to learn that brain cancer has replaced leukemia as the leading cause of cancer deaths among children and adolescents.
Pediatric Cancer 5-Year Survival Rates, Source: Defeatdipg.org
When I see these pediatric cancer stats, I have to wonder, why is there not more funding for DIPG and brain cancer research? Why does such an aggressive, deadly cancer get no attention compared to other cancers? Brain cancer is the most prevalent cancer in children and has the highest mortality rate. Yet, it is the least well known and is the most under-funded.
The Live Auction! Hockey Legend Ray Bourque
One of my favorite parts of the evening was watching Ray be the live auctioneer for the evening. I’ve had the opportunity to meet Ray a few different times, and he is such a kind, generous guy. Not to mention one of the all-time hockey greats. Growing up in a hockey family, it’s pretty cool to have the opportunity to chat with him!
I spoke with him a bit before the event got started, and asked him what his connection to brain cancer was. He said he was approached at his restaurant Tresca (one of my favorites in the North End) and was asked to get involved with the NBTS. When this happened, he thought of me and other brain cancer patients and said absolutely. The more he’s learned about brain cancer, the more he wants to get involved. Being the guest auctioneer at this event was one way he could help, and help he did!
I think he has either been an auctioneer at other events or was an auctioneer in a past life, because he did a fantastic job. Towards the beginning, people seemed hesitant to bid high amounts, but once Ray started offering “floor checks” (since there was no ice rink nearby) in exchange for higher bids, people started chuckling and bidding higher. Thanks to Ray, tens of thousands of dollars were raised during the live auction. I know Ray will continue to stay involved with the brain tumor community, and I hope to see him at next year’s Gray Gala!
My friends and family with Ray Bourque at the Gala
This event really made me want to get more involved with the NBTS. The more I think about it, the more frustrated I become that there isn’t more focus on finding a cure for brain cancer. It can affect anyone, and is usually impossible to treat. What our community really needs are more celebrities like Ray Bourque to step up and help bring awareness to this deadly disease. Thank you, Ray, for bringing more visibility to such a devastating disease.
On a more positive note, sitting at our table (thanks again Mom & Dad for being a Partner Sponsor of the Gala!) and watching my family and friends donate their hard-earned money towards brain cancer research and the NBTS was incredibly moving. My “tribe” has been so incredible and I appreciate you all so much.
Thank you for reading!