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.
I'm the father of a 20 year old young woman who was diagnosed with chordoma in 2013. After surgery to stabilize her neck and remove a very benign looking lesion, pathology concluded a chordoma, an extremely rare and relentless bone cancer. As most terrified newly diagnosed cancer patients and families probably do, we researched treatment options endlessly on Google and learned that there was a lot of inconsistent "information" on the web. After many deep dives in a quest for consistent information, I noticed that most of what was on the web was very old. Where's a source of truth? Is anyone is doing research or is this an orphaned disease? Can anyone provide complete treatment plan? We next learned that my daughter's tumor wasn't removed completely… the two tumor remnants were left behind and growing rapidly. We met with many local experts, but they didn't have any chordoma experience given its rarity… so endless referrals and lots of blank faces, then more referrals.
We finally found the Chordoma Foundation, learned an incredible amount of current information from their team, and leveraged their website which has tools like a doctor directory of qualified chordoma experts. We received support and engaged specialty centers, ultimately traveling across the USA for treatments on the east coast, the best fit for my daughter's scenario. As we battle this extremely rare and tenacious cancer, we continue learning about the extended research being driven by the Chordoma Foundation: They promote global cross-institutional collaboration by expert medical teams, have numerous measurable accomplishments, and guide families like mine to find the best treatment options available.
I feel that Chordoma Foundation helped save my daughter’s life.
Smart people. Funds go to cutting edge research & clinical trials. Patients are guided by people who have been through it. Community conferences share information and staff is approachable & supportive. Excellent nonprofit organization.