My daughter was diagnosed with Clear Cell Sarcoma on Nov 2020 at the age of 13. Needless to say, the shock and utter despair was overwhelming. The doctors and oncologists were so unfamiliar with it, and many had never even heard of this rare form of cancer. Sarcoma is about 1% of all cancers, and CCS is about 1% of sarcomas. Thus, finding information and direction is and continues to be difficult and stressful. Shortly after scouring the internet { never a good thing to do with medical issues }, I found Sara’s Cure. Immediately I was welcomed into the group with kindness and understanding. My plea for help was met with compassion and guidance, and continues to be as we go through her treatment. The team of medical doctors and researchers are the most knowledgeable in the world about this disease, and the founders, Lennie and Denny are a breath of fresh air within a stifling diagnosis. When my daughter’s oncologist was going to do surgery to remove her tumor, something just didn’t sound right about it. In discussions with the SC team, they connected me to an oncology surgeon, Dr Kevin Jones { now Sara’s Cure’s medical advisor }, who is studying CCS. He helped tremendously in creating a better treatment plan for her and even talked with her oncologist directly to effect the changes that needed to happen. It’s things like this, and the direct and communicative way that they personalize such a harsh disease that makes Sara’s Cure such a huge benefit for us.I am so grateful that they seek and partner with entities that can truly make a difference doing the research and testing needed. Sara’s Cure doesn’t just stop at helping the patients deal with the emotional side of things, they are leading the way in research and development and bringing attention to CCS. They led me to a rare disease institute that took my daughter’s tumor biopsy so they could duplicate and study it, with hopes of finding solutions that will help fight this for others in the future.This disease may be rare, but I know that with an organization such as Sara’s Cure, hope is being brought to the patients and families that are suffering. With that hope comes the strength to fight and the knowledge that we won’t stop until we find a cure. And for a mom with a girl who has an adventurous life yet to live, that brings unimaginable joy.
My daughter passed from clear cell Sarcoma May 7th 2019. Amarah was only 12 years old. Her journey started with a 5cm tumor in her leg. This cancer is highly aggressive and a cure needs to be found to save our loved ones. This clear cell sarcoma foundation formerly Sarah’s cure was an amazing support and knowledge to assist in her journey. They continue to fight to give those that are diagnosed with clear cell sarcoma a fighting chance. Thank you for ALL you do!
We appreciate all the hard work that goes into this foundation Clear Cell Sarcoma provides great knowledge and support
This foundation is truly amazing in so many ways! I would never have known what to do or where to go for help on this terrible disease which our daughter had been diagnosed, if not for the clear cell sarcoma foundation. The people in this group care deeply and helped us find our doctors and treatments and work around the clock trying to find a cure. I really love this organization. It’s hard to find this high a caliber of people so dedicated, caring and helpful, Thank you Clear Cell Sarcoma Foundation!
Working for the Clear Cell Sarcoma Foundation has been incredibly rewarding and sobering.
I work with an incredible team that works intensively in our own research projects and partnering with other clinicians to find a treatment and work towards getting our phase II trial going. We also teach others what we know and seek out ways to understand this horrible disease. We as a team all have a stake to never give up whether for a loved one or ourself.
What an honor to be apart of such a mission.
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Clear Cell Sarcoma Foundation has incredible heart and drive. It is patient or patient family driven with the focus always being what is best for those with Clear Cell Sarcoma. Working for this amazing foundation has not only been fulfilling but incredibly Rewarding. With little known about this horrible disease CCSF is always working to bring hope to those with CCS.
This amazing group of people made walking through CCS with my daughter much easier than it would have been! They did so much for us and made connections for us that we wouldn’t have even known about! I’m forever grateful for them in every way possible. Even after my daughter past in 2023 they have still been an amazing group that I know I can reach out to at any time. I appreciate that so much! Rest east Autumn!
I was diagnosed with Clear Cell Sarcoma June 2024 after being misdiagnosed for months! It was in my best intrest to have a below the knee amputation. Clear Cell Sarcoma Foundation has connected me with people just like me. They have shown me that I am not alone in my fight. I now know people who are there to listen and help me with my fight!
When my som was diagnosed there were no one to contact and get information about this rare disease. Thankfully, CCSF was formed to educate and guide those looking for information and ways to contact with others in the same situation.
As a Clear Cell Sarcoma patient, a very rare cancer, it's a great oppurtunity to just share with each other, and comfort/support each other with Clear Cell Sarcoma Foundation's help, without mentioning help from the foundation.
When I was first diagnosed with Clear Cell Sarcoma, I couldn't find much information about it anywhere other than the Clear Cell Sarcoma Foundation. Their Facebook group has been a tremendous support throughout my cancer journey. They are the only grassroots organization that is actively advocating on behalf of Clear Cell Sarcoma patients.
The Clear Cell Sarcoma Foundation has been an invaluable resource of support and information! The CCSF Director is always advocating for all of the CCS Family from her home town to the world - speaking to anyone would can help with finding a treatment or cure. The CCSF works to raise funds to support research.
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Sara's Cure has been an amazing source of support and information for those with Clear Cell Sarcoma (CCS). It's my cancer "family". Sara's Cure is made of CCS patients and family/loved ones there to cheer you on when you're going for testing, treatment or just need an ear to listen. They're the only group that I know of that's actively working to find organizations to research the disease in hopes of identifying treatments and maybe a cure. Many of the board members have family or loved ones with CCS. Sara's Cure has partnered with organizations to educate patients and providers on clear cell sarcoma as well as include CCS patients in applicable drug trials. They've partnered with the NIH to initiate a Natural History Study for CCS.
Fantastic people who really care about you and keeping you alive and getting the best treatment and care. Being such a rare cancer means it’s lonely and really confusing but the team are soo supportive and knowledgeable. Can’t recommend them more, whether you are diagnosed yourself or supporting a family member or friend. This team is phenomenal.
I cannot express enough how the Clear Cell Sarcoma Foundation has been an unwavering source of support during my battle with Clear Cell Sarcoma. When I received my diagnosis in 2021, I was overwhelmed and scared, but the foundation and the team behind it stepped in and provided me with the knowledge, resources, and connections I needed to navigate this rare and aggressive cancer. They offered comprehensive information on the disease and its treatment options, empowering me to make informed decisions. Their expert connections allowed me to consult with specialists, ensuring I received the best possible care. What's more, the support groups they facilitate created a network of understanding and empathy, making me feel less isolated in this challenging journey. Additionally, the foundation's tireless advocacy efforts gave me hope for a brighter future, as they work relentlessly to raise awareness and support research in the field. In short, the Clear Cell Sarcoma Foundation has been a lifeline, providing vital support to individuals like me facing this rare and aggressive cancer.
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When my sister was diagnosed we felt completely lost. Lennie from the Clear Cell Sarcoma Foundation spent so much of her own valuable time helping guide us in the right direction of where to begin and connected us to the powerful community behind the Clear Cell Sarcoma Foundation. With a cancer as rare as this, every bit of connection helps. The CCSF gives us such hope that we will find treatments that can help patients like my sister.
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When my sister got diagnosed with clear cell sarcoma we had a million questions and it seemed like there was very little information out there. Then we found Sara’s Cure and we were quickly hooked up with resources, doctor and facility recommendations, and an amazing personal support network. I don’t know that we would have been able to navigate this rare and challenging diagnosis without the guiding hand of Sara’s Cure.
This foundation helped us navigate the difficult decisions we had to make for our daughter. We learned so much about the clinical trials available at the time of her disease. There is so much information available for all of our warriors still looking for information.
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Sara’s Cure has helped many patients and their families find the best treatment for Clear Cell Sarcoma. All those involved are passionate about finding a cure by getting the scientific research done to get several Clinical Trials started. We found such comfort when we found this group. Sara’s Cure is the best non-profit working very hard to find the cure for CCS.
CCS foundation it’s a CCS family. This is a place when you can got answers, care, support. And it’s terrible important for people with so rare disease. My boyfriend has a CCS, and this foundation give us a huge resource: information, personal experience of others warriors, and the HOPE. We see people, we see an organization which do their best, wich do almost impossible things to bring us as quickly as possible to new research, methods and cures against this terrible sarcoma. Thanks to such people and such organizations, one day the world will learn to fight CCS on equal terms, learn to win.
CCS Foundation provides a wealth of knowledge and support to people diagnosed with CCS and their families and friends. Given the rarity of CCS the fact the Foundation exists is a huge support globally and I for one would be lost without it.
Thankful that I was connected with this group early on in my diagnosis. They provide tremendous resources for medical care and treatment plans, as well as advocate for all members in the group in the efforts to find a cure!
Our daughter was diagnosed with Clear Cell Sarcoma in 2018 and we got connected with Sara's Cure in January of 2019. This is such an ultra rare cancer that finding anyone that knows anything is next to impossible. The work this Foundation is doing for the Clear Cell Sarcoma family is ground breaking and bringing hope to a very hopeless situation. Our family's lives have been forever changed because of Sara's Cure and we are beyond grateful.
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HOPE is at the very heart of Sara’s Cure. They work tirelessly to bring awareness, research and Hope to all the CCS family . Knowing there’s so little known about this awful disease , they have fought so hard to get the medical and research community to come together to see that this ultra rare disease needs their help to find not just a cure, but treatment, understanding and trials. What an amazing non profit organization with the most caring and loving people I know. Love Sara’s Cure!
Thanks to Sarascure my nephew is finally getting the treatment he needs! Lenny & Kelly are real true fighters for a cure! We thank God daily for Saras cure!!
Sara's cure is providing hope for families like ours by funding vital research into a cure for Clear Cell Sarcoma. Our son was diagnosed with this incredibly rare cancer in January 2020, right in the midst of the Covid pandemic. Being such a rare cancer means we don't know anyone else in our area of the country that has experienced it. Without Sara's cure we would have no hope.
Sara’s Cure is doing amazing work to try to help fight a rare form of cancer that has taken the lives of too many beautiful souls ❤️
Sara's Cure was so inspiring to my daughter Samantha 26 yrs mother of two children. Samantha eventually lost her battle to CCS in June 2021. Samantha found peace and support from Sara's Cure. Lennie played a big role in Samantha life she encouraged her, and advocated for her multiple times. Samantha trusted Lennie. Samantha also became very engaged in knowing what treatments (clinical trials), how aggressive CCS was and also having faith in seeing other success stories posted on Sara's Cure. I forever am grateful for Sara's Cure.I pray everyday that a cure will be found. Samantha was diagnosed at age 19 and remained in remission for 7 years. The picture below is Samantha walking with her kids to get ready for a Christmas picture. Little did we know it would be their last one together.
I donated and received a thoughtful and wonderful gift package. Saras Cure is the leader of the awareness and finding a cure for Clear Cell Sarcoma of the Soft Tissue!
Sarah’s cure has helped me so much as far as being able to connect with others that have Clear cell sarcoma. I no longer feel alone. I know that I have a family that can help connect me to many great Drs and they keep me updated on the latest treatments that might be available to me if needed.
Sara’s cure is like a family. Only within family have I witnessed such love, passion, and care for one another.
They work tirelessly to find treatments and a cure for Clear Cell Sarcoma - a very aggressive rare cancer that predominantly affects children and young adults. They are there for you before, during, and after your regular follow up scans, as well as being there during times where you are feeling unwell and the cancer may be back. The personal and emotional support as well as medical support (in the form of their deep thorough knowledge of this horrific cancer) is endless and growing.
They say Sarcoma is the loneliest cancer, and Clear Cell Sarcoma is one of the rarest, but with Sara’s Cure on your side it truly doesn’t feel so lonely.
Lennie W. 11/29/2021
We are so thankful for you and to be a part of the CCS family. It is scary and lonely when you are told you have a rare cancer and there is no treatment. Patients and families in the CCS community are what drive us to keep going every day.
My good friends started Sara's Cure when their daughter was diagnosed with clear cell sarcoma (CCS) and they found that there were no effective treatments much less a cure. With my background in research, I knew I could help them make a difference. Our first clinical trial for CCS just opened and we are about to launch the first CCS patient registry. We have so much to do but are making progress on many fronts including the formation of a network of physicians and researchers knowledgeable about CCS, always keeping the patient voice at the center.
My sister, Natalie, was diagnosed with this extremely rare form of cancer (clear cell sarcoma) without a cure or set path of treatment. Sara’s Cure was a great resource for my family and others to know that there were others going through this as well. It’s a great community that has shared what experimental treatments have worked. Natalie passed in March 2019, but I believe through her fight and treatments, much knowledge was gained towards finding a cure for clear cell sarcoma, and Sara’s Cure helped a ton in that process.
I’m not even sure how to put into words what Sara’s Cure did for me in the darkest days of my life! They are truly soldiers in this war on CCS! I was diagnosed in the summer of 2019. I had surgery then went through intense radiation only to find out my tumor returned and invaded my whole hand. Had my first conversation on the phone with Lennie and was at the Cleveland Clinic a week later. Met with Dr. Anderson who is a pediatric oncologist and Dr. Nystrom who is a orthopedic oncologist. I had my right hand amputated March 2020. I have been cancer free for almost 2 years and i credit that to Sara’s Cure! Thank you! Thank you!