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Grateful for a community that is driving change

The pace of progress lately has been astounding, and it is all possible because of your support.

Taking action

As we enter a season of thanks, we have a LOT to be thankful for. From the growth of our Doctor Directory and Patient Navigation Service, to the continued expansion of the chordoma research community, to the promising results coming out of our new Drug Screening Pipeline, we’ve overcome tremendous odds and accomplished so much.

The pace of progress lately has been astounding, and it is all possible because of your support. Thank you to all of our champions and volunteers for your tireless dedication and generosity. Every dollar you donated and every hour you spent volunteering brought us closer to ensuring that patients and families battling chordoma today will have the opportunity to benefit from this progress in their lifetime. Just look at the incredible support we’ve received so far this year:

grat stats

Here are just a few examples of champions and volunteers who went above and beyond the call of duty to create a brighter future for everyone affected by chordoma:

Mandel gratitudePotempa gratitude
For the third year in a row Steve Mandel organized a group of runners to race in a half marathon while raising money for the Chordoma Foundation. This year the group of nearly 30 runners participated in the Airbnb Brooklyn Half Marathon. With runners traveling from as far as London to participate in the race (including Steve), they capped off another year of success with a cocktail party to raise funds for the Foundation. We are grateful for Steve’s efforts to help us make an impact on the lives and outcomes of patients.Michael and Noreen Potempa hosted their second One in a Million Benefit this year bringing together nearly 50 people in Chicago for a cocktail party to raise funds for the Chordoma Foundation. This year’s event featured a special guest speaker, Dr. Gary Gallia of Johns Hopkins Hospital, who successfully removed Michael’s chordoma more than two years ago. The funds raised from this event will be used to support clinical trials in hopes of improving the odds for others.
Riccomini gratitudeKalenov gratitude
The Riccomini family honored their son Cameron’s memory, holding not one but two events this year. Cameron was nuts about sports, and his brother, Conor, continues to persevere in Cameron’s honor by holding an annual dodgeball tournament at their local middle school. The Riccominis also hosted their annual Crawling for Cameron event in eastern Long Island and shared that this year’s pub crawl was the most successful yet. Conor kicked off this year’s crawl by performing with his band Omega (pictured above). We are inspired by and grateful for the Riccomini family’s support over the years.Daniel Kalenov’s birthday celebration was certainly one to remember, and the best gift he didn’t ask for. After being diagnosed with a skull base chordoma about a year earlier, his wife Michelle surprised him by organizing a party that not only celebrated Daniel’s life, but also raised funds to advance the research and development of new therapies for chordoma. The party brought together their friends and family, plus fire-breathing belly dancers to raise an incredible amount of support for the Foundation. Thank you Michelle and Daniel for your efforts to give back.
chordoma survivors groupMaureen Schroer
Members of the Chordoma Survivors Facebook Group banded together over the last year to raise money to fund a cell line prize. We are humbled by the generosity of all who donated. The gift will be used to fund a newly validated cell line at Massachusetts General Hospital. Our community of supporters is truly remarkable – patients, family members, and friends who continue to fight selflessly to cure chordoma.Maureen Schroer has harnessed the power of social media to spread awareness about her personal journey with chordoma and in the process collected a myriad of supporters for the Foundation including family, friends, and even past teachers. Maureen set up a champions fundraising page four years ago to share her story and allow people to rally around her. She has received an incredible response to her monthly posts on social media and we admire her commitment.

We are so inspired and grateful to ALL of our supporters. Your gifts of time and money have generated tremendous momentum, and are propelling us forward toward new treatments and cures. From the beginning, the Foundation’s story has been one of patients and families coming together to accomplish the improbable, and after nearly 10 years, we continue to be grateful for the power of perseverance.

Our Executive Director Josh Sommer said it best when he shared:

The Chordoma Foundation was started by and supported by the chordoma patient community. We view our key role as harnessing the collective resources, talents and motivations of everyone that desires a better future for chordoma patients and focusing them in a very strategic and systematic way, both on accelerating the development of new treatments and on helping chordoma patients get the best care possible.

As we look to the coming year, including the expansion of Patient Services, the investments in discovering new therapies, and the launch of more than a half-dozen clinical trials, we are as enthused and optimistic as ever. Thank you for being a part of this growing community working together toward a brighter future for everyone affected by chordoma!

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