A family member was diagnosed with a Chordoma recently and we were struggling to find resources to understand that this meant and what we could do to support our loved one. The Chordoma Foundation was a godsend for our family. From informative conferences, community connections, and fundraising teams (Brooklyn Half!) they were indispensable. I am so impressed with their sense of community and professionalism.
My son was diagnosed with cervical chordoma last year at age 13. We felt very lost and unsure with what we were told from Doctors. Being so rare we quickly learned that we needed someone who new chordoma to help us. I contacted the chordoma foundation and they explained everything and the importance of getting to a chordoma specialist. They helped us with the questions to ask his doctors and gave us the name of the doctor we ended up going with who we now call our sons earth angel. With such a rare cancer and so many doctors not understanding it, the Chordoma Foundation saves lives and gives you peace that someone has your back and knows the research. We will forever be thankful for them and helping in saving our sons life. We are so thankful to have them apart of his TEAM!
I've been diagnosed with sacral chordoma in august. My doctor got me in contact with CF The Netherlands. Soon i took part in the facebook-group of Chordoma Survivors. In the early days after diagnosis, CF provided me with a lot of really very essential information. It helped me to make the right choices considering treatment. CF provides me with a whole support system: it gives me medical and practical information, but also gives me emotional support! It would have been a great difference if I had to go through this alone!!!
In the last six months I was diagnosed with clivial chordoma and underwent surgery to remove the tumor which had entered the dura of my brain, was pressing on the optic nerves, and had started to intrude on my brain stem. The Chordoma Foundation has provided me with professional and peer support, helping me learn about this extremely rare form of cancer and what to expect before and after surgery. The daily updates help one to learn from others and that we are not alone in our individual struggles in surviving this nasty disease. The Navigators are always responsive to the individual needs for each person who requests assistance. The Community of patients and caregivers provides a forum where we can connect with others, unload concerns, and share information. Chordoma impacts one in a million people. It changes one's life. The Chordoma Foundation actively supports research in finding a cure and better treatment options for this rare and destructive form of cancer. Thank you.
Our son Aaron was 11 years old when he was diagnosed with a clival chordoma in Nov. 1997. At that time very little was known about this rare disease. Throughout our 7 year journey we only knew of one other person in the USA with this disease so this one family in Texas (we lived in NC) comprised our "chordoma community". After multiple surgeries across the US, proton beam radiation at Loma Linda (which was the only facility in the US offering PB), and a gallant fight, Aaron succumbed to this persistent tumor in Aug. 2004. He had just graduated from high school with highest honors in May, 2004. When we learned about the formation of the Chordoma Foundation in 2007, we knew this was something in which we had to be involved. We attended the very first Chordoma Community Conference in Bethesda, MD in March, 2008. From the start we realized what a unique and highly driven group of people were involved in this Foundation. We immediately felt a strong bond with the group even though we were the only people there who had lost a loved one. Unfortunately, there were a number of people there whose involvement continued like ours. . . The Chordoma Foundation has made exponential progress in the past 10 years. If I were a newly diagnosed chordoma patient I would be quite optimistic about my outcome. This is a patient driven Foundation with strongest of ties to their research and medical community. I'm not sure there is any other community with this high level of interaction and communication. The CF deserves every recognition available not only for their excellence and success but for their personal interaction with patient/family/caregiver population. Karen Sain
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.
Try to imagine a 18 year old boy, his world turned upside down by a rare cancer diagnosis, deciding it is time to beat that disease. Supported by a network of dedicated people, stepping into a lab, getting the most dedicated doctors from around the world to join him in finding a cure and improve the lives of patients. I mean, is there any better way to start a patient organisation? I am a proud volunteer, this is an amazing organisation.
The Chordoma Foundation has been an absolute blessing over the past few months. They have been there 100% with support, information, advice and cheering us on. I'm not sure if we would have been able to navigate the chordoma world without them. Thanks to their advice and resources, we go second opinions, found experts and made a plan with some really good doctors. Thanks to them, my husband isnt looking at a death sentence. I am forever grateful for this amazing foundation.
The Chordoma Foundation was there for me when I was in a dark, lonely place after diagnosis. Finally found a place to connect with fellow survivors and it has helped me feel not so alone. I go to bed each night knowing the Foundation is doing all they can to find a cure for this devastating disease.
The Chordoma Foundation information saved my life. I was misdiagnosed with a pilonidal cyst in July 2017. My local surgeon, not realizing what it was, lanced my 'cyst' twice, then tried removing it with an ordinary open surgery. Thankfully he had enough sense to stop and biopsy the mass. His la di dah attitude was even further apparent when he casually tossed a sheet of paper with information from Google at me in response to my question about the biopsy results.
Thank God the Chordoma Foundation was the top entry on that sheet. As my wife began researching the information the Chordoma Foundation had available, only then did we realize how serious the situation was.
The Chordoma Foundation's expert doctor lists helped me get treatment opinions and options from doctors all over the US, ultimately landing me in Boston for care.
Their patient connections helped me contact and communicate with others around the country who encountered this rare form of cancer. That support has been invaluable.
The research efforts spearheaded by the Chordoma Foundation have already found treatment options that didn't exist 10 years ago and new strategies are being developed every day that will help doctor's cure chordoma and that will help treat other types of cancer.
Chordoma Foundation is a very, very friendly, helpful and professional organisation. The way the organisation works to move research forward is truly impressive and as a mother of a girl with clival chordoma it gives me hope.
I was diagnosed with sacral chordoma in January 2016. With the help of the chordoma foundation, I found an experienced doctor at MD Anderson in Houston, TX. Thanks CF.
When I was diagnosed 2 years ago with a Clival Chordoma I was scared and felt alone. The foundation has brought me hope and a sense of family. They have been there to help me through all my chordoma questions and struggles. Having the foundation has made my cancer diagnosis a little more bearable and liveable.
Chordoma foundation was Very important to me And to my husband that had to take a hard decision on June 2016. Before having his surgery to take of his sacral Chordoma we all necessary support and orientations from Chordoma foundation. Today my husband is living with no sequels. Thank you CF.
Chordoma is an extremely rare cancer that can affect people at any age. But because it's so rare, it can be very difficult to get a correct diagnosis and even more difficult to access appropriate treatment. At present there is no cure and treatment options have been limited. This is where the Foundation comes in. As the parent of a young chordoma patient, I depend on the Foundation for vital information. And because I want my daughter to have a long life, I depend on the Foundation to spearhead research. For a small organization, they have an incredible record of bringing together researchers and physicians from around the world to uncover the mechanisms of the disease, learn what treatment works, and strive for a cure. Additionally, the Foundation provides a range of support services for all those affected by chordoma.
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.
My husband was diagnosed in 2012...We found the group , and the foundation, and the members are so active and supportive, and all actions by the foundation priceless, as they are the only voice to help raise awareness for this Uncommon cancer , one in a million...and they move mountains, and throughout my husband journey, both the foundation and the group were there. Present to help and support the medical and research world, getting more funds, and also there for patients and also their family as no one is prepared to cope with such aggressive and also unknown cancer. My husband passed away, in Paris, July 2015, and I am still part of the group and attended a conference in Milan, for him.the work of Josh Sommers, and all around him, who created the Chordoma Foundation with doctors and patients is remarkable.
The Chordoma Foundation's mission to find a cure for this rare sarcoma, chordoma; to help support and educate patients and families as they seek expert care in the USA and abroad, is surpassed by none. From Josh Sommer, as CEO, the Bord to the incredible staff and volunteers, the Foundation's goals will surely be met soon. As a patient, a volunteer and as someone who advocates for others with chordoma, I cannot recommend this organization more. If you are looking for somewhere to donate your treasure, give of your talent or you are seeking help, please connect with this Foundation.
The Chordoma Foundation came into existence when there was no research for this exceedingly rare disease. No way to reach anyone. Through their efforts we now have many scientists, researchers and doctors working together to advance us towards new treatments. If not a cure...those of us affected by Chordoma are so grateful for not only the science but also the patient outreach. This has grown to help hundreds of patients and family that would otherwise be lost. The Chordoma Foundation is responsive, holds many conferences and over and above anything else- gives us hope. If it were not for them, many of us would not be here. They are saving lives, nothing less.
The Chordoma Foundation has provided everything a patient or caregiver for this rare disease could wish for. When I was diagnosed there was nothing available and there were very few experts. No attention was being paid to research and finding new treatments and a cure. Since their inception I have seen The Chordoma Foundation grow to be a powerful force - building relationships and momentum which will ultimately lead to a cure, I am sure. There are expert Advisory boards including Medical, Scientific and Community. The website provides all the information one could need for treatment, learning, trials, support, research, questions- you name it. There are yearly conferences where families can go learn the latest and meet the doctors. They are now working worldwide and fostering relationships overseas which is fantastic. For a small population of only 300 US patients diagnosed a year, so much is being done and attention is finally being paid. Thank you to the Chordoma Foundation for giving us HOPE, which is so important. There is really nothing more.
My husband was diagnosed with a clival Chordoma in 2006. Since then he has had multiple surgeries, radiation treatment as well as chemo therapy during his battle with this cancer. The Chordoma Foundation not only gives us hope but they have completely change the course of my husbands treatment by sharing so much information, guiding us into the hands of experienced doctors and being an unbelievable support system through some extremely hard times. The Chordoma Foundation is making great strides towards a cure and better treatments while also providing support and hope to everyone effected by the disease. We are forever in their debt.