Tag: National Brain Tumor Society

Brain Tumor Awareness Month: Recap of #BTAM 2023

May 20th, 2023
Going Gray in May

May is Brain Tumor Awareness month, and it’s been a busy one for us! With so much going on, I wanted to recap a few major events to share what advocacy looks like for our family.

I’ll share more about…
- The Tumor Takedown Tailgate
- National Institutes of Health: Neuro Oncology Branch
- Race for Hope: Washington D.C.
- National Brain Tumor Society: Head to the Hill
- Quality of Life Research Roundtable
- Roon: The most helpful place online for people navigating complex health conditions
I also pause to recognize that May 26, 2023 is my official “Crani-versary,” or the anniversary of my brain surgery (awake craniotomy) and resection of my primary brain tumor. I don’t want to share too much about this milestone in this post because I haven’t quite sorted through the complicated emotions, and I don’t want to take away from the community tone of this post to center myself and a personal milestone. My diagnosis anniversary is next month, June 10 (several days between surgery and official pathology/diagnosis), and you can expect that between May 26 and June 10, I’ll publish a post reflecting on seven years living with brain cancer, but for today, for this post, let’s keep it topical for Brain Tumor Awareness Month.

The Tumor Takedown Tailgate: TTT4

Our annual local fundraiser to benefit National Brain Tumor Society was a huge success, despite rain and even sleet–because Indiana in April, but the sun broke, and the huge tent and hard-working volunteers at Folktale Greenwood had no problem with accommodating the bad weather. We raised more than $20,000 to benefit National Brain Tumor Society, bringing our four-year total donations to $85,000!!

When we started the #TumorTakedownTailgate we had no idea that we’d create an anticipated annual event that connects our community and puts up these huge dollars for brain cancer research. I don’t want to get ahead of myself, but I can’t wait to bring us all together next year for TTT5 when I know we’ll push over $100,000 raised in five years to benefit NBTS.

Thanks again to Folktale (book your next wedding or event here), Dashboard Food Truck and Catering (eat your next meal here), Jack’s Donuts (snag your next breakfast here), Mashcraft Brewing (buy your next beer here, and invite me to join you), and Ramona (find this delicious organic wine spritz on your next beer run (B double E double R U N, beer run).

To Lauren Casey from RTV Indianapolis, thank you for your incredible emcee duties, Jay Elliot (book him for your next party or event), and Ben Tatum (catch him around town and ask him for a Green Day cover in my honor), you all brought energy, talent, and set the tone for the day.

Special thanks to my wife, Whitney, and our best friend, Lindsay, along with Chef Mark Henrichs, and literal superwoman Katie Henrichs for your partnership in pulling this event together each year!

Follow the TTT Facebook and Instagram to be first to learn about our next event.

NIH: Neuro Oncology Branch Visit

I was humbled to be invited with my dear friend, Kim Wallgren, Executive Director of the Collaborative Ependymoma Research Network (CERN) for us each to deliver guest lectures at the National Institutes of Health Neuro Oncology Branch. Drs. Mark Gilbert and Terri Armstrong are dear friends of the brain tumor community and world-leading clinician-researchers at the NIH. This was a truly humbling experience to get a tour of an NIH lab and meet with researchers, then deliver our perspectives on survivorship and patient advocacy.

We even grabbed a sandwich at Call Your Mother. My middle name is Jewish Deli, if you didn’t know.

Race for Hope DC

The Race for Hope DC is one of the largest brain tumor fundraising events all year! This 5k around the Capitol raised over $1.3M for brain tumor research this year alone!! It was awesome to be on hand for this powerful event, and it’s one of the few times all year when all of our social media brain tumor pals are together in one place! Here I am with two of my closest friends, Liz Salmi (middle; my fellow punk rocker) and Lisa O’Leary (right; my co-facilitator for our monthly support group, Brain Tumor Support Conversations).

Head to the Hill

Head to the Hill is the signature event for National Brain Tumor Society and our brain tumor community. We mobilize nearly 400 advocates from across the country to bring our legislative priorities to Congress through meetings with members of Congress from advocates’ districts and states. This year we asked Congress to…
- Fund the National Institutes of Health at $51B
- Fund the Department of Defense Peer Reviewed Cancer Research Program at $150M and maintain pediatric brain tumors and adult brain cancers are eligible research areas
- Co-Sponsor the Stop the Wait Act that will eliminate deadly waiting periods for Social Security Disability benefits and Medicare coverage for people facing serious and terminal diagnoses
What was most special for our family this year was having our oldest, Isaac (11yo), join us. Isaac joined Whitney and me to meet with our elected officials to tell our stories and make our asks to Congress. Isaac was amazing! By the end of the day he even led one of our advocacy meetings in the lead speaking role! One of the staffer’s asked Isaac on the way out if he was going to be a lobbyist. Without missing a beat Isaac replied, “Nope, a lawyer.”

It was such a proud moment to share my life of advocacy with our oldest son. I travel a lot for speaking and advocacy events, and it was so meaningful to share some of this with Isaac. He’s incredible.

Quality of Life Research Roundtable

A few years ago my pal Liz, you already met her above, invited me to join as a co-investigator in a project that she won grant funding to convene through the Patient Centered Outcomes Research Institute (PCORI). We called ourselves the Brain Cancer Quality of Life Collaborative, or BCQoLC, and our goal was to create a research network to define and innovate on interventions to enhance the quality of life for people living with brain tumors.

After years of research and a few published papers, the group took a further step this May by convening a multi-disciplinary research meeting hosted by NBTS. I can’t say too much about this event yet, but each person in the picture below is a patient or caregiver in the community with deep relationships, engagement, and influence in the field. I am humbled to call them friends. This picture is my Twitter timeline come to life!

Left to right: Adam, Lisa, Liz, Sabine, Emily, Jeremy, and Guy

Roon: Launch of the iOS App

Speaking of brain cancer quality of life, I met Rohan Ramakrishna, MD and Vikram Bhaskaran in 2021 when they approached me about a new platform they were building to transform the way medical information is delivered to patients and caregivers.

It’s our goal to be the best place online for people navigating hard health conditions, starting with the aggressive brain cancer, glioblastoma. The app has recently launched on iOS and the web at www.roon.com. On the app, you’ll find educational videos delivered by experts as well as answers to many questions that come up during the journey of glioblastoma. These short form videos from researchers, physicians, nurses, mental health professionals, patients, and caregivers deliver medically vetted information in a human way. We launched with glioblastoma, and dementia, Long Covid, and ALS are the conditions already underway to be released on the app soon.

Scan the QR code to check out the app–you can access many of the resources without even creating an account!

roon-flyer42 Download

Conclusion to #BTAM

As Brain Tumor Awareness Month draws to a close I have a super secret special announcement to share that you’ll just have to wait to hear more about! It’s coming up next week, so stay tuned to my social feeds and right here on the blog to get the update!

Follow my Link Tree to see all my social channels! Until next time, peace, love, brain. Adam out.
TTT4 Raises $20k to Benefit National Brain Tumor Society!

May 1st, 2023

We express our most deep and sincere gratitude for all attendees of the 2023 #TumorTakedownTailgate to benefit National Brain Tumor Society! Thank you for braving wind, rain, and hail to attend the 2023 Tumor Takedown Tailgate. Let’s not bury the lede, with some auction and donations outstanding, our unofficial total raised to benefit National Brain Tumor Society is … drum roll, please …

Just over $20,000 raised to benefit NBTS!! This brings our total raised over four years to more than $85,000!!

Wow. In Old Town Greenwood, Indiana, with a small and mighty team, we’ve raised money that rivals some of our larger community events in big cities throughout the country. What’s even better, many of you approached us this year with ideas for growing the event even bigger next year.

THANK YOU VENDORS, SPONSORS, ENTERTAINMENT, AND VOLUNTEERS

This event would not be possible without Mark and Katie Henrichs from Revery, Folktale, and Dashboard Food Truck. Please follow their social channels for your next meal or event. For those who don’t have the privilege of seeing behind the scenes like me, Katie was literally setting up the event space herself when we arrived, then she was braving rain to run power out to the tent for our emcee and live music.

Full House in the Tent

Mark prepped all the food and was then in the truck cooking for the event, with his chef from Revery, Juan. Plus Mark donated everyone’s first round of food. Incredible generosity!

Dashboard Food Truck parked outside Folktale

Andrew from Mashcraft set up the beer once, then set up the beer again, when we had to move the beer under the big tent when the rain started. Andrew’s wife, Brittany, was pouring beer for the event. They not only donated the beer but worked the event as volunteers! Please meet Adam and Whitney at Mashcraft soon!

Andrew from Mashcraft Brewing

Lisa, one of Whitney’s best friends, and the wife of one of Jack’s Donuts head guys, Dave, picked up and then carried boxes of donuts from the shop to her car to the event.

Jack’s Donuts

Another one of Whitney’s best friends, Bethany, arranged the Ramona donation! How good is that canned spritz?!

Gabe, one of Adam’s best friends, designed this year’s shirt and tracked down a sponsor, Stupid Rad Merch, to get the shirts at cost, then covered those costs to allow all shirt sales to go directly to NBTS, plus he and his wife, Amy, ran the merch table.

Sam, another one of Adam’s best friends, and Chad, Whitney’s brother, Adam’s brother in law, were carrying supplies, keeping the rain out of the tent, taking out the trash, and being just all around incredible volunteers and worked all day behind the scenes.

Left to Right: Gabe, Adam, and Sam

Lauren Casey, RTV Indy, thank you doesn’t cover it. Your professionalism, your passion for the event, and your friendship with Adam and Whitney shine through in all that you do. We are so grateful for you!

Lauren Casey RTV6 Indianapolis

Jay Elliott and Ben Tatum were incredible. Please follow Jay on Instagram and Ben on Instagram to catch them playing all around Indy, including at Smocktown, just behind Revery!

Lindsay Eichelman, the brilliance behind the event and planning, somehow balanced event planning for TTT4 in the midst of planning her own freaking wedding!! Lindsay, we love you, and none of this would be possible without you!

Left to Right: Kalen, Amy, Lindsay, and Lisa

Whitney, my spouse, event co-founder, and primary caregiver, for all the planning, hard work, preparation, and childcare organizing, thank you. You know the signs of my fatigue and symptoms, and you know when to boss me to sit down! We couldn’t pull this off without each other.

Thank you Boookends Financial Planning for your generous sponsorship, and thank you to all silent auction donors who make this event so special and hyper-local.

EVENT HIGHLIGHTS

The highlight of the event for me is connecting with other members of the local brain tumor community. I shared hugs of recent diagnosis, hugs of survivorship milestones, and hugs of grief. All of these things are part of the brain tumor experience, and living with this disease teaches you to embrace all the moments from the most heart wrenching to the joyful. Thank you to those who came out for the first time this year. You are part of our community, and we are part of yours, I am so happy that we have each other!

If you’re living with a brain tumor or caring for someone who is, you are welcome to check out the monthly, virtual support group that Adam co-facilitates. If you have lost someone to a brain tumor, you are welcome to attend the virtual grief support group. Both offered by NBTS.

FOLLOW US ALL YEAR LONG

Our Facebook page and Instagram are updated all year long, and for those not into social media, Adam’s personal blog is the source for updates throughout the year. Adam blogs pretty regularly about his life living with brain cancer.

THANK YOU!!

This event is successful because of YOU! There were several four-figure donations on our online donation page. That generosity just blows us away. Each time we see a donation of that size come through I get tears in my eyes. Truly you are changing the world, and we’re doing it together. For your generosity in any dollar amount, we wouldn’t be successful without all of you.

TTT Co-founder, Whitney
Fourth Annual Tumor Takedown Tailgate to Benefit National Brain Tumor Society

April 15th, 2023

Launched in 2018, with a break for Covid precautions, the #TumorTakedownTailgate is back for its fourth year to raise money for brain cancer research to fuel new treatments through giving to National Brain Tumor Society. To date, we’ve raised nearly $70k to benefit NBTS, with $22k last year alone. With your support, we can knock on the door of $100k total donated through our local fundraiser in little kown Old Town Greenwood, south of Indianapolis, Indiana.

Read on to see how you can be involved! We’ll cover event details, how you can donate, even if you can’t make it out for the event, and sponsorship opportunities that are still open! Plus tickets are on sale now!

We’re Back! TTT4

In 2016, Adam Hayden (hi, that’s me!) was diagnosed with an aggressive brain cancer called glioblastoma. This is a lethal disease, with near universal recurrence (or regrowth), even after aggressive surgical removal and a full course of chemotherapy and radiation. Despite treatment advances in several other cancer types, the survival statistics for brain cancer are largely unchanged over the past 30 years. Adam’s seven years of survival is without a doubt the exception, not the rule. Often this disease kills in months, not years.

Adam relearned to walk while inpatient at a rehab hospital following an aggressive awake brain surgery in May 2016.

Despite the grim prognosis, breakthrough treatments are truly on the horizon. NBTS is funding research on the cutting edge, like the DNA Damage Response Consortium that is funding a consortium of researchers from Yale Cancer Center, St. Jude Children’s Research Hospital, New York University Grossman School of Medicine, the University of Minnesota, and the University of California San Francisco. Your giving to benefit National Brain Tumor Society makes investments in this cutting edge research a reality.

Event Details: April 30, 2023, 2pm – 5pm EST

Hosted again by our friends at Folktale Greenwood, our 21+ event features food from Dashboard Food Truck, beer from local heroes Mashcraft Brewing, donuts from Jack’s, organic wine spritz-in-a-can Ramona, and music from Jay Elliott and Ben Tatum. Also, we have a new shirt design to unveil for TTT4 to mix it up for those who picked up a shirt last year – they sold out! Huge shout out to one of Adam’s best friends for 30 years, Gabe, and the awesome dudes at Stupid Rad Merch for the friend prices for charity. Punk rockers unite! These shirts are only available at the event!

TTT4 Shirt Designed by friend, Gabe, with a huge friend price from Stupid Rad merch

Plus we’re back with another incredible silent auction featuring local artwork, experience packages, a signed Pacers team ball, and more. Lauren Casey, WRTV Indy, returns as our emcee, and between music sets, hear from Adam, his spouse, Whitney, and other members of the brain tumor community who will share their experiences. Check out this great story Lauren did on Adam’s family.

This is an outdoor event in the parking lot outside of Folktale (adjacent to restaurant Revery), and public parking is available across the street. The food truck and picnic tables are arranged in the parking lot, and Tavern at the Tale, the bar at Folktale, will be open. Your $40 ticket includes two drink tickets and voucher for food at Dashboard. Additional tickets and beverages for purchase at Tavern at the Tale are available, but please do be responsible!

Adam and his wife, Whitney, speak during the TTT in 2019

We are striving for a cashless event. With QR codes and square readers, plan to have a phone or a card with you for the silent auction and t shirts. Tickets will be available at the door, but to help us plan for the event and to speed up the check-in process, please do purchase tickets in advance if possible!

Important to note, we are keeping the event 21+ again this year. We heard feedback that an all ages event would be great for families, but as parents ourselves, we want to keep safety top of mind. In the future we may consider expanding to a family-friendly event, but this year continues to be 21+.

Donation Opportunity if You Can’t Make it

Adam and Whitney love that we’ve met other families throughout the country impacted by brain tumors, and we know there’s no perfect date that accommodates busy Spring schedules. Many in our social network can’t attend in person, but we have a way to give for those who can’t attend.

Tax deductible donations can be made anytime at our dedicated event donation site! Using this site to donate automatically generates a receipt with NBTS’s 501c3 code for tax deduction. Plus we all get the satisfaction of watching those donations tick up! Telethon vibes, anyone?

For those whose employers offer matches for charitable giving, this is a great way to expand your individual donation. We are happy to help provide any supporting documentation if this is an option at your company. Just let us know!

Sponsorship Opportunities Still Open

Sponsorship opportunities are still open for donors and organizations who would like to support TTT4 beyond individual giving. Benefits include table space for Gold Sponsors, opportunities to speak during the event for Gold and Silver Sponsors, and comp registrations. Check out the tiers and be in touch if you’re interested in sponsoring.

ttt4-sponsorship Download

We Can’t Wait to See You!

Grab those tickets and let’s beat last year’s total of $22k during the fourth annual Tumor Takedown Tailgate!! Follow us on Facebook and Instagram for all event updates and info! See you on the 30th!
2019 Tumor Takedown Tailgate

April 10th, 2019

Join us Sunday, April 28, 2019 at Revery in Old Town Greenwood, Indiana, to raise money, awareness, and connectedness with and for the National Brain Tumor Society (NBTS)! Tickets are available now from our Eventbrite ticketing site. Tax-deductible donations can be made at any time to our NBTS event donation page.

We thank Erin Lisch from RTV6 who is serving as emcee for the event. Your general admission ticket includes live music from J. Elliott and band Free but Not Cheap, food from the Revery kitchen, including sliders, Chicago style dogs, and Italian beefs, with Tailgate sides. Also, enjoy two complementary beverages with an opportunity to purchase more, featuring Mashcraft Brewing, Central State Brewing, organic Italian wine spritz from NYC-based RAMONA, and wine provided by distributor RNDC. For dessert, grab a donut, courtesy of Jack’s Donuts.

A ticket also entitles you access to our silent auction, which includes a signed Pacers team basketball, thanks to Official Sponsor of the Pacers, Jack’s Donuts, a branded sweat suit from high-end sneaker retailer Stadium Goods, services from Hope Plumbing, swag from local soccer club, best in the midwest, Indy Eleven, distillery tours, photography packages, workout classes from 317 Fitness Studio, restaurant gift card to Morton’s courtesy of Berkshire Hathaway Indiana Realty, Sushi Boss, salon and massage certificates, artwork and more!

Stop by our Mission and Education table, where you can chat with folks directly impacted by brain tumors, and learn more about National Brain Tumor Society. Also, joining us for the first time this year is Cocktails and Chemo, a local non-profit with national reach that is focused on caring for the caregiver for those care partners who are the unsung heroes in cancer care.

Featured image, Adam Ramsey Film, who will photograph our event for the second year!

Massive thanks and applause to our gold Sponsor, two years running, the BlakeStrong Bowell Fund!

Many thanks to our silver sponsors Stadium Goods, the Luminous Fund, Bookends Financial Planning a Raymond James Company, and Hope Plumbing.

And shout out to our bronze sponsor, J Dog Junk Removal.

All event proceeds benefit the National Brain Tumor Society | $40 | 21+

To stay up to date on #TumorTakedownTailgate news, drop us your contact info!

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Inaugural Tumor Takedown Tailgate to Benefit National Brain Tumor Society

April 13th, 2018

Please join me and Whitney at restaurant Revery, 299 W Main St, Greenwood, IN, on April 22, 2018, 3:00pm-7:00pm for a tailgate to raise funds for National Brain Tumor Society! We are joined by Lauren Casey, WRTV6, J. Elliott, Mashcraft Brewing Company, Central State Brewing, RNDC, an Eli Creek Family Farms hog roast and American style grilled burgers and dogs from Performance Food Group, grilled by the team at Revery, the #BlakeStrong Bowell Fund, and a silent auction featuring local retailers, for a great event for an even better cause.

Please share this blog post, the Eventbrite ticket link, or the following PDF’s to spread the word about the event.

Inaugural Tumor Takedown Logo and Flyer

Inaugural Tumor Takedown Menu_print

The event is $40/ticket, which provides two complimentary drinks, food, music, a special survivors recognition activity, access to and the silent auction, and more. Additional drinks may be purchased on site. The event is 21+. If you would like to donate, but are unable to purchase a ticket to attend in person, donations can be made directly to the event donation page here. All proceeds benefit National Brain Tumor Society.

In June 2016 I was diagnosed with glioblastoma, an aggressive brain cancer, with a grim prognosis. Whitney and I are raising funds for to the largest non-profit, brain tumor research funding organization in the US, National Brain Tumor Society (www.braintumor.org)