Saves and/or prolongs lives of patients while keeping us informed and hopeful on research and future treatments. Couldn’t survive this cancer without the hands on help of the Chordoma Foundation; the Patient Navigators help find doctors and treatments on an individual basis. Invaluable!
They quite possibly saved my wife's life. After her diagnosis with Chordoma, her surgeon handed us an info sheet from the Chordoma Foundation and basically told her, "Good Luck." Our next step was ravenously consuming the information compiled by the Chordoma Foundation about the disease, and it's treatment. Because of the Chordoma Foundation, within a few days we were more knowledgeable about Chordoma than any doctor in our community. This was followed by talking with their patient navigators, who helped us find not just Chordoma experts, but Chordoma experts who were specialists in my wife's specific set of circumstances. They also helped my wife to be accepted into a Chordoma Clinic at the National Institutes of Health, which put us in contact with, and allowed her to be evaluated by, the very foremost experts in Chordoma treatment and research.
Beyond the specific help they have given our family and many others, the Chordoma Foundation is organizing the scientific community around the goal of finding treatments and ultimately a cure for Chordoma. These treatments may even hold the key to curing a variety of other cancers with a similar weakness. They organize yearly community conferences to keep the community of patients, family, and caregivers in touch with and involved with the doctors treating and researching Chordoma. They raise funds and provide them for research into treatments. The research they have funded has led to significant advances in the understanding and treatment of Chordoma, and could very well lead to a cure.
Without any hesitation, I can say their work has saved my wife's life, and many others. Their work may eventually lead to a cure for a cancer that otherwise required invasive treatment, and few positive outcomes.
When I was first diagnosed in 2003, there was no Chordoma Foundation. Since their founding, they have been a major force in starting research for a rare disease where nothing was being done. Now we have major trials and hope for new treatments and a cure.
The Chordoma Foundation has also become a huge repository of patient information and guidance, which is critical to saving lives. From a Doctor Directory, to Patient Navigators, to Recommendations based on Medical and Scientific Advisory boards as well as Post Treatment referrals. Anyone with any questions can get them answered through myriad methods available on site.
The Foundation is very responsive to questions, suggestions and we would be lost without them. I am so grateful they exist and are doing such a phenomenal job!
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.
Great organization. They helped give my wife Karen Mullane 10 more years of life!! Thank you Dr. Wolinsky, MD. Our family is actively seeking donations for this organization all the time. We are also writing a book from the patients perspective to be published sometime in 2021. It will detail the medical and personal involvement day to day , month to month of the chordoma journey from diagnosis to death. Anyone who needs to talk to someone about their chordoma diagnosis and what to expect is welcome to call me anytime at: 810-333-6933 or email :
firstname.lastname@example.org FORWARD TO A CURE!!!!!!!
Review from Guidestar
Chordoma Foundation helped us find one of the most skilled medical teams in the world for this rare disease. The team was able to do a successful resection of our daughters tumor, something surgeons in her home country said was impossible. We will forever be grateful for the support and help this professional and friendly organisation provided.
My 34 year old husband was diagnosed with a clival Chordoma one month ago. I have to admit that even though we are both doctors, neither of us had ever heard of the word Chordoma before. We quickly realised that our local medical team had very little experience with Chordoma given how rare it is. We felt quite alone going into this scary journey. That was until we reached out to the Chordoma Foundation. Through CF, we were able to access good quality, up-to-date research and within hours we received an incredibly helpful reply from a CF patient navigator. We managed to email expert neurosurgeons overseas and they kindly reviewed my husband’s scans and gave us a plan. With that knowledge, we were able to seek second, third, fourth opinions until we found a surgeon who we are confident in New Zealand to operate on him. Through CF we were also able to join an online community where we received an overwhelming amount of support and help. We cannot thank the CF enough. They are truly life savers.
The CF helped save my sanity and provided much needed guidance when I was diagnosed with sacral Chordoma. The conference’s are invaluable for sharing information between patients, doctors & researchers! The CF is invaluable and continues to strive for a cure!
My late husband, Doug Booth was a PGA Head Pro and GM at a private golf course in the Bay Area. In July of 2009 while practicing for his US Open qualifying round he showed signs of double vision, seeing two trees near his golfball rather than one. We had an HMO at the time, and he was horribly misdiagnosed, even going through 2 botched endoscopic surgeries of the skull base in the course of 10 months. I took over the research aspect of his illness and learned about chordoma by googling skull base lesions. This search took me to the CF, and ultimately to his highly experienced team of doctors at UCSF. They were able to buy Doug 3 years, and also referred us to MD Anderson for Proton Beam radiation. This picture is of me and Doug on a flight to Boston for the 2013 Chordoma Conference. He sadly lost his battle in July of 2013. As his widow I am forever grateful for the help and guidance we received from the Chordoma Foundation.
I have been a volunteer with the Chordoma Foundation since 2016. The dedication of Josh Sommer, all the people affiliated with the Foundation, and all the volunteers is phenomenal! When my husband lost his battle with Chordoma years ago, we were unaware of the Foundation’s work. Now, because of the continuing research by specialists around the world, clinical trials, establishment of the Biobank, the many resources offered, as well as the assistance of the Patient Navigators, there is Hope for Chordoma patients! Donations to this nonprofit truly support the work that is being done to save lives - please donate if you’re able!
No one ever told me that life after diagnosis could become sweet again with love and gratitude. My service to the Foundation has been an honor. The organization's leadership with Josh Sommer at the helm, its Board of Trustees, Medical Advisory Baird and staff demonstrate over and over again what dedication to finding a cure looks like. The numerous partnerships across the USA and Europe continue to grow. The Foundation's patient services, community conferences and international conferences involve many experts in this rare cancer field. I'm in awe. Thank you, CF!
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.
Getting diagnosed with cancer is always terrifying, but even more so when the cancer is very rare. I got diagnosed early this year and had no real leads. Then I started looking into the foundation. I finally had somewhere to get information. I had leads about where qualified doctors were located, I had contact information, and I had a support group. Going from not being diagnosed to having a major neck operation in a matter of months can be extremely difficult, but the Chordoma Foundation has made it easier. I am so grateful for the work they have done and the help I have received.
I found the Chordoma Foundation several months after my initial diagnosis and surgery. They have literally helped extend my life as their patient Navigators have been able to guide me to the best surgeons when I had recurrances, and have helped me find and get accepted into very limited clinical trials which have given me hope for a much longer, more fulfilling life. I have no doubt I would already be dead without their support and the research they have funded which has lead to so many clinical trials. I owe my life to the excellent work done by the Chordoma Foundation.
This amazing organization changes the lives of patients through their patient navigation services, as well as research efforts and education. We are in awe of this incredible nonprofit and the team that works tirelessly on behalf of chordoma patients and their families. Patients diagnosed with this rare cancer can find a group of caring individuals, as well as volunteers, who can truly make a positive impact on their lives by helping with information and support, as well as research initiatives and clinical trials. It is truly a one of a kind organization, helping those with this one-in-a-million form of cancer.
The Chordoma Foundation is absolutely excellent and critical to all patients dealing with this extremely rare cancer affecting 1 in a million. Their ability to push the treatments forward, launch more trials and research this disease is unparalleled. Their work is helping patients to truly live longer, allowing us to have hope for the future, to have hope in future treatments as well as a potential cure and acknowledge the amazing work done by the Chordoma Foundation.
The Chordoma Foundation literally saves lives. I am a patient with this exceedingly rare disease. I reference their website often for the most up to date information and refer others to it for guidance. The Patient Navigators are responsible for advising the patient community and facilitating contact with vetted medical doctors. Before they existed we were truly lost. Alone and with only old information on the internet. They are very responsive to suggestions and work diligently to help find new treatments for this unrelenting disease. They give us hope which is the most important thing.
The Chordoma Foundation became a caring family when I was diagnosed with Chordoma and didn’t know where to turn to.
I live in the U.K. but I love the fact that patients from all over the world can join in and share their experience without the fear of being judged or miss understood as we are all going through the same motions.
I am so grateful that the Chordoma Foundation was here to assist me at the start of my journey and is still here for me and everyone of us.
The Chordoma Foundation was there for me during one of the darkest hours of my life and continues to be to this day. I found support, encouragement, important information and formed friendships. Such a valuable resource to anyone facing a Chordoma diagnosis. I am now a Peer Guide Counselor for the Foundation and assist the newly diagnosed with their journeys. I can’t imagine going through what I went through without the 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.
I have Clival Chordoma skull-based cancer, and I had exhausted all hope and all treatment options. I contacted the Chordoma Foundation and was able to speak to two experts that provided me a list that day of contacts and doctors' phone numbers for other treatments, and within a couple days I was speaking to an oncologist at a major hospital. Within a week I was accepted into a new clinical trial treatment! I am certain that without the Chordoma Foundation I would have thought there were no other treatments available. The Chordoma Foundation is literally saving lives!!
3 months ago I learned that the lower back pain I've been having was due to a Chordoma tumor growing in my lumbar spine. Part of the emotional trauma of this diagnosis was hearing how rare this type of cancer is. My expectation was that there would be very little work going on to develop treatments and cures for Chordoma. It has been a tremendous surprise to discover the Chordoma Foundation, both in terms of the wealth of information I've been provided as well as the promising research that is under way in large part due to the efforts of this foundation. It has given me confidence that my treatment plan is optimal and hope that there will be even better options available in the future.
In 2013 my daughter Madison then 18, was diagnosed with chordoma. We did what everyone does when they hear an unfamiliar word… we Googled it, and learned chordoma is a one in a million tenacious bone cancer. Thankfully we live close to Los Angeles near many outstanding cancer centers, and we consulted with most of them. Unfortunately they all suggested differing treatment approaches, which was both frustrating and frightening. How do you even choose which path to follow; everything felt like it was falling apart.
I found the Chordoma Foundation and spoke with a Patient Navigator. She impressed upon me that given the complex nature of Madison's disease, she would need to be treated by a multidisciplinary team that treats chordoma routinely. I was given names of three referral centers and after assembling copies of medical reports and MRIs, we met with two teams in person and had a telephone consultation with the third. To our amazement, all three recommended the same approach! While another surgery would be required along with radiation, we finally had a consensus from chordoma experts, versus differing opinions from several highly prestigious cancer centers.
We could actually exhale for the first time in months. Only after we found the CF did it feel like things could actually fall in to place.
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.
The chordom foundation was our go to resource when my husband was first diagnosed in 2014. The staff is excellent and great source of information.
When my 13yo son was first diagnosed it was being handled all wrong because they knew so little about chordoma. In a panic I reached out to the chordoma foundation, who got me in touch with a specialist. We have since called our sons surgeon and radiation oncologist our sons earth angel. The truth is so is the CF. If isnt wasnt for them we wouldn't have had the top care. Knowing we were being helped by experts gave us such peace.
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!
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.
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 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.
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.
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.