My Nonprofit Reviews

Sue Horst B. - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Sue Horst B.

178 profile views
2 reviews

Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

This Foundation provides education and guidance for those affected by A very rare cancer, Chordoma both patients and family. Without the guidance of the Chordoma Foundation, our son would have undergone surgery by a neurosurgeon who was recommended by our local hospital but in reality might have been a good skull base surgeon, but who had minimal experience with Chordoma. The Chordoma Foundation has a list of vetted Chordoma Experts who have had experience with this cancer that only affects 1 in a million. They have a data base that serves individuals around the world. THe research spearheaded by the CF has lead to new understanding on the trigger of Chordoma (braychurea), and best practices of treatments. Ongoing research will lead to a cure to this cancer that has affected our son. When one contacts the CF for guidance, one receives individualized guidance.

Role:  Client Served

Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

In 2016, our 43 year old son was diagnosed with a very rare skull based cancer called Clival Chordoma. I quickly checked the internet to find out about this cancer. The information was appalling. Studies quoted were outdated. Luckily, that same night, I found the Chordoma Foundation site, and the information was much more hopeful and up to date.

Our local hospital has referred him to another hospital to see a “specialist”. Luckily that “specialist” was on vacation. I contacted the Patient Facilitators, who quickly provided us with names and contact information of 4 or 5 Chordoma Experts. Within a week, we saw the first of the experts. The Chordoma Foundation information emphasized the importance of having an expert physician doing the surgery right, the first time to the long term outcome of the patient.

I have attended 3 of the Chordoma Foundation Conferences. I have been so impressed with the caliber of the conferences. I find it exciting to learn about the great strides this Foundation has made toward the treatment and finding a cure for this very rare cancer.

During the past 2 1/2 years, I have been constantly amazed at how much progress has been made in the Chordoma research. I was quickly impressed by the guidance and support that the Chordoma Foundation and Chordoma patients and families provided to our family. It made such a difference to us, that I have become an active volunteer and advocate for the Chordoma Foundation and Communities.

Role:  Board Member