My Nonprofit Reviews

My husband was diagnosed with his chordoma cancer in 2015. I attended 2 conferences that the Chordoma Foundation held in Boston, MA in 2016 & 2018. I learned so much about chordoma and what to do in case a recurrence happened. Unfortunately, my husband had a recurrence in 2020 right when the pandemic was going into effect.

I didn’t have as much despair with the second recurrence as I had with the initial diagnosis since I attended the conferences and knew what to expect and how to navigate the next steps. The Chordoma Foundation has held webinars during the pandemic keeping us informed on current treatments and how to manage the disease. The CF has given us hope with their services and funding research. They have brought together patients, researchers, and medical providers. My husband and I are truly grateful for all that they do.

My husband was diagnosed with a clival chordoma in September 2015. I feel fortunate to have found the Chordoma Foundation early on in our quest for information. Chordoma is a rare, malignant bone cancer with a high chance of recurrence. I feel the information we learned from their website gave us the best chance of having the best treatments for the best outcomes considering the gravity of this disease.

The Chordoma Foundation (CF) has YouTube videos from past Chordoma Community Conferences available for viewing. They have resources for finding experts in surgery and radiation. The Chordoma Foundation steered us towards the Chordoma Survivors Facebook Group where one can get support from those who know first hand what it is like to live with this rare disease.

We have been members of the chordoma community for less than a year and I am in awe of everything the CF does. They put patients first. Their goal is a cure. Their method to acheive that goal is powerful. They have gathered experts in their respective fields to treat patients, conduct research, hold meaningful conferences, and advance clinical trials.

The CF employees and volunteers are responsive to questions and suggestions. They give us hope.