Ten Years of Accomplishment | Liddy Shriver Sarcoma Initiative
Praise for a Decade of Achievement
David Thomas, MD, PhD - Peter MacCallum Cancer Centre in Australia
The Liddy Shriver Sarcoma Initiative has made four unique contributions to the challenge of sarcoma:
- The Initiative has passionately supported research into sarcoma, a key contribution for a rare and under-supported group of diseases.
- The Initiative has interacted with researchers actively, rather than passively. I find this very important -they have a leadership role, exhorting us to greater things.
- The Initiative has linked the research community to its public constituency.
- The Initiative has been the sole international supporter of sarcoma research, bringing together groups worldwide to work collaboratively.
From the heart: Well done, Bruce and Beverly and all those at the Initiative that made these things happen.
Murray Brennan, MD, FACS - Memorial Sloan-Kettering Cancer Center
When you begin an endeavour to help others after a life changing personal experience, turning challenge into opportunity, it is hard to imagine what that will be like in 10 years. Ten years, a million directly informed, tens of millions informed by that million, and more to come. Knowledge is valuable, accurate knowledge priceless. Shared experience with strangers that become friends enriches us all. But the Liddy Shriver Sarcoma Initiative is more than a patient portal, it has served the professional community well, with funds for research, in communication of progress and ideals, and as a trustworthy source for the sarcoma patient. We salute the Liddy Shriver Sarcoma Initiative for a task embraced, a task fulfilled, and an opportunity pyramid still growing.
Roger Wilson - Sarcoma Patients EuroNet (SPAEN)
The work that Bruce and Beverly Shriver have undertaken as a tribute to their daughter Liddy has been one of the most remarkable achievements in cancer information I can think of. Their ability to bring the sarcoma community together to create an authoritative and accessible database demonstrates amazing skills in so many fields of activity, from relationship building, through technology, to editorial management and high-order organisational skills. The Liddy Shriver Sarcoma Initiative has been of inestimable value to so many people, and we do not hesitate to suggest those seeking knowledge about sarcoma to go to the website.
Margaret von Mehren, MD - Fox Chase Cancer Center
The Liddy Shriver Sarcoma Initiative is a unique patient advocacy organization. In its ten years of service, it has developed and disseminated educational materials about sarcoma that benefit patients, their caregivers as well as providers. Also, I have been impressed by its ability to foster research collaborations between researchers, not only from different institutions but also from different countries.
Melanie Lio - Strike Out Sarcoma
I met Bruce Shriver on a sarcoma support website during my son Michael's fight with Ewing's Sarcoma. After he lost his battle, at just 22 years old, our whole family was understandably distraught. Bruce sent me a small message several months after Michael's passing and asked if we'd like to do an event to help fund research. I ran it by our family and friends and it was amazing. Everyone was on board and we now had a purpose, some positive energy to lift the fog of grief that had lain heavily on all of our hearts. We started Strike Out Sarcoma, complete with a website and many, many events over a period of three years. We raised over $120,000 for research. I would recommend this to anyone who is grieving for the loss of a loved one to do something positive. I thank God every day for the Shrivers for pulling me out of a very dark place and also continue to be amazed at their incredible devotion to helping others.
Ian Judson, MD - The Royal Marsden in the United Kingdom
Over the 10 years of its existence, I have consistently referred my patients to the Liddy Shriver Sarcoma Initiative's website for authoritative, peer-reviewed information and advice. The feedback is always positive. Patients find the information is presented in an accessible way, and it helps them to feel less alone knowing that other people have their disease and are facing the same problems. From a personal point of view, I also go there for information and have often found exactly what I was seeking. Keep up the good work!
Ricardo Cubedo, MD - Hospital Universitario Puerta de Hierro Majadahonda in Spain
2013 will be remembered as a sad year for the Spanish sarcoma community. Francisco Javier and Maribel, co-founders of AEAS (our national patient's association), died shortly one after another. Francisco Javier was first president and the leading force driving AEAS from a project to a reality, while Maribel was first vice-president and last president, serving tirelessly nearly until the last day of her life. Both were patients and friends of mine.
As I write this note, I take a look back into AEAS' early documents. The first informal meeting took place on a rainy afternoon in April 2009. Its proceedings record how the Liddy Shriver Sarcoma Initiative was mentioned as a source of inspiration and a partner ready to help from the very first day. It turned out to be exactly that and a lot more.
Shortly after AEAS formal foundation, Bruce encouraged and invited Francisco Javier along with his wife and children to join a Team Sarcoma Day Cycling Tour in New York. We scheduled our own Sarcoma Awareness Day at our hospital Puerta de Hierro so that a Skype connection was possible. I will never forget Francisco Javier exultantly smiling from the huge screen to dozens of patients gathering at the hospital's assembly room. Under a blazing blue sky, surrounded by bikes, children and barking dogs, he and Bruce addressed us all, providing the living evidence of the power of patients' association. From the following years up to now, the Initiative has remained steadfast on our side, fostering Spanish translations for their excellent ESUN article series, supporting the emergence of additional associations, funding research projects and acting as trusted friends. Spanish sarcoma patients and doctors alike congratulate you on your first decade anniversary. The Liddy Shriver Sarcoma Initiative really makes a difference, making a better world for those touched by sarcoma.
Robert Landes - The Wendy Walk
We, the Landes family, were blessed to meet the Shrivers five years ago. Our lives have been changed forever fighting this fatal and destructive disease. Ali, Matt and Jackie along with the Shrivers have collaborated tirelessly for the last four years to grow the Wendy Walk and to find a cure for liposarcoma. Our entire community owes them a great debt of appreciation and continued support. We love you and we can never stop in our efforts.
Robert Maki, MD PhD - Mount Sinai School of Medicine
There are few, if any, endeavors to improve communication about sarcomas both at a physician and patient level that are as successful as the Liddy Shriver Sarcoma Initiative. Bruce and Bev Shriver somehow found it within themselves, despite their daughter's passing from Ewing sarcoma, to organize both research and better communication about these tumors so that there is less fear, better knowledge, better research and better outcomes. Read more from Dr. Maki...
Brad Bryan, PhD - Texas A&M University Health Science Center
The funding provided to our lab from the Liddy Shriver Sarcoma Initiative has been absolutely instrumental in progressing our understanding and treatment of angiosarcomas. This funding has allowed us to complete preclinical development studies resulting in two novel therapeutic drug targets that show great promise for the future treatment of patients with angiosarcomas. Rare diseases such as angiosarcomas are unfortunately underfunded by large public and private granting institutes, and it is foundations such as the Liddy Shriver Sarcoma Initiative that carry the torch and ensure that continued therapeutic breakthroughs are accomplished by our researchers and many others.
Ed Kurtz - LMSarcoma Direct Research Foundation
I wish to extend our congratulations and thankfulness for your ten years of outstanding work and support for sarcoma patients and their families. Your organization has set an outstanding example for other organizations to follow. You have been an excellent partner in the effort to bring light on rare cancers and in the funding of research that will ultimately result in treatments. We at LMSDR very much appreciate the support and sharing you have provided us over those 10 years.
Ola Myklebost, PhD - Oslo University Hospital in Norway
The Liddy Shriver Sarcoma Initiative grants, with their focus on stimulation of international collaboration, have contributed remarkably to increase networking and cooperation in the field and in sharing of resources and ideas. This will, with time, be to the significant benefit of sarcoma patients.
Martee L. Hensley, MD - Memorial Sloan-Kettering Cancer Center
Congratulations on this 10th anniversary milestone! The accomplishments of the Liddy Shriver Sarcoma Initiative are truly impressive. It is a privilege to be part of this network of basic science and clinical researchers, of sarcoma patients and family members, of grant reviewers and grant recipients, all focused on improving the lives of people with sarcoma. It is inspiring to me, as a clinical researcher focused on uterine sarcomas, to see the successes of this community, knowing that it is this kind of focus and dedication to rare tumors that makes a world of difference for so many.
Roma Hanlon, Supporter
I love the thoroughness of the Liddy Shriver Sarcoma Initiative in selecting grant recipients, and the preference for collaborative research. I feel very comfortable donating to the Initiative knowing that almost 100% can go to promising research. Although we started our own nonprofit where we live, we still intend to support the Initiative. Bruce and Bev have done an amazing job pulling together so many experts to share their knowledge through the Initiative's website and newsletter. Bruce is also a wealth of information and available to help families in any way he can, including being active on the ACOR discussion list. Ten years - a job well done! Liddy is no doubt proud of all you have done for families across the globe! Here's to another ten, and to a CURE!
Jean-Yves Blay, MD, PhD - Université Claude Bernard in France
It is a pleasure to see the work achieved by the Liddy Shriver Sarcoma Initiative over the last 10 years. During this time period, the Initiative has established a strong link between the patient community and research in sarcomas. It is a model of such an association in my perspective, and I am also particularly happy to see the links and relations which take place with patient advocacy groups around the world, including of course the European Spaen!
Edwin Choy, MD, PhD - Massachusetts General Hospital
Sarcoma is not only a rare cancer, but it is quite heterogeneous. Therefore, as a group of diseases, it is quite poorly understood and communicated to the public. As a result, our field often suffers from misinformation and inadequate funding for both research and clinical care. In this darkness, the Liddy Shriver Sarcoma Initiative has served as a flashlight, focusing much needed light on the need for better biology, treatments, understanding, and communication of sarcoma to both patients and their physicians. Research funded by the Initiative has led to breakthrough discoveries published in rigorous peer-reviewed scientific journals and additional funding from the NIH and NCI. Importantly, LSSI serves as a centralized resource for my patients to go to learn that there is an army of patients and doctors working every day to conquer this disease.
Elizabeth R. Lawlor, MD, PhD - University of Michigan
Patients with sarcoma and their families are often left feeling bewildered and alone following their diagnosis. Compared to other more common tumors, most people have never heard of sarcoma until it affects them directly. The Liddy Shriver Sarcoma Initiative can be a lifesaver, figuratively and literally, for sarcoma patients. By providing state of the art information from trusted experts in the field and by directly funding cutting edge research into biology and novel treatments, the Initiative has for 10 years served as cornerstone for sarcoma advocacy and scientific advances. I congratulate and thank the Initiative for their incredible dedication and hard work. Their direct support of my team and our research efforts is helping to ensure that sarcoma patients in the future will have better outcomes than patients in the past.
Nancy Strub - The Nick Teddy Foundation
Congratulations to Bruce and Bev on LSSI’s 10th birthday! Our beloved Nick died of Ewing’s sarcoma two years ago, and the choice of LSSI as beneficiary for our fundraising was based on the whole range of services it offers. As Nick’s mom, the ability to designate dollars specifically to Ewing’s research was especially important to me. But other considerations weighed almost as heavily:
- highly personal attention
- clear-eyed and discerning selection and funding of international, truly collaborative studies
- individual focus in directing patients and families to treatment and clinical studies
- efficient use of social media and the internet to raise awareness.
It is clear that no other organization matches LSSI’s efforts or holds more promise to benefit sarcoma patients worldwide. Many, many thanks for your vision, tireless dedication, and hard work!
Charles Forscher MD - Cedars-Sinai Medical Center
The Liddy Shriver Sarcoma Initiative has helped my patients in innumerable ways. On a broad level, it has helped support innovative sarcoma research, which has the potential to improve the lives of many patients affected by sarcoma. The effort to encourage collaboration rather than competition makes the Initiative unique. In addition, the ESUN effort and the printed ESUN guide for the Newly Diagnosed provide useful, practical “nuts and bolts” information on many of the issues facing sarcoma patients, as well as providing state of the art reviews on various sarcoma topics. Sometimes patients with sarcoma, their caregivers and loved ones feel very alone when faced with these illnesses and often feel there is very little information out there for these very rare tumors. Both ESUN and the guide help provide the useful information patients and families need. The bike rides have raised awareness of sarcoma and the Initiative has been the inspiration for the Wendy Walks with the Landes family. All of these efforts are done with a modest staff and little overhead which is quite remarkable.
David Loeb, MD, PhD - The Johns Hopkins Hospital
I came to sarcoma research relatively recently, joining the field in 2006 (not long after you started the organization). The Liddy Shriver Sarcoma Initiative gave me my first ever sarcoma-specific laboratory research grant, so I guess you could say that I owe my success in the field in large part to the support of the Liddy Shriver Sarcoma Initiative. I have sent countless patients and families to your website, and all who have visited the site have shared with me how helpful the information is. I am impressed with how successfully the Liddy Shriver Sarcoma Initiative has been at assisting all aspects of the sarcoma community, from research to patient care, in such a short time. I hope you have many more strong years ahead of you.
Laura Somerville, MD, PhD, Survivor and Supporter
It's hard to believe that the Liddy Shriver Sarcoma Initiative is only 10 years old, when it has fueled what seems like a century's worth of sarcoma education, community awareness, groundbreaking research and tireless networking, networking, networking! As a doctor, I have never witnessed patient/survivor activism of this caliber for any other disease. As a sarcoma patient, I can't imagine what I would have done without it.
Leigh, Blake and Corey Webb - Hannah's Chance Foundation in Australia
Congratulations Bruce and Beverly on your 10 years of devotion to the world's sarcoma community. When I found the Liddy Shriver Initiative in 2009, when my husband was diagnosed with his second liposarcoma, you inspired me to be a part of international sarcoma awareness. Your dedication to raise awareness of sarcoma has reached every corner of the world. We are all blessed to be a part of it and thank you for all you have done. You have educated us on the disease and given us knowledge to question our medical teams. The love and support shines through to everyone. The Liddy Shriver Initiative has helped our family's journey with sarcoma. It gave us the tools to cope; we have connected with amazing people who know what we are all going through. Thank you Bruce, Beverly and your amazing team. Sending our love and hugs from Queensland, Australia.
Pete Anderson MD, PhD - Levine Children's Hospital
The Liddy Shriver Sarcoma Initiative is 10 years old! The Initiative's support of the sarcoma community and ability to connect families and researchers in new and better ways has been truly appreciated by many. Since "we don't get smart talking to ourselves," but get better and more informed through interaction with others, the "Sarcomas Knows No Borders" theme is an excellent reminder to not silo our knowledge and expertise, but to teach, share, and care.
Corinne M. Linardic, MD, PhD - Duke University Medical Center
Support from the Liddy Shriver Sarcoma Initiative came at a critical time for our research group...we were just beginning to understand the role of a new signaling pathway in rhabdomyosarcoma, but our NIH funding was winding down. Through the Liddy Shriver Sarcoma Initiative we were able to "re-set the clock" and have now secured further funding to continue our sarcoma research. Hurrah for Liddy Shriver!
Melissa & Steve Oberst, Supporters
Congratulations, Bruce and Beverly, for 10 years of sharing your gifts, talents, resources, time, energy and so much more. You have helped families around the world! You have raised money, funded research, and created the most complete online educational resource that the average reader can understand (just to highlight a few accomplishments). The Initiative has supported our family with an open heart, open mind, and filled us with HOPE as our daughter continues to fight Ewing Sarcoma. We are so grateful for everything you have done and will continue to do for the sarcoma community. You are making a HUGE impact in the sarcoma community. Liddy left this earthly place far too soon, but her wings are certainly all around us, and I have no doubt her hands are guiding you! Here's to many many more 10 year celebrations!
Shreyaskumar R. Patel, MD - The University of Texas M.D. Anderson Cancer Center
Sarcomas are extremely rare and complex tumors that affect all age groups, young and old, disrupting and devastating the lives of the patients and their families. In their time of need, having the support of the experienced and knowledgeable "navigators" like the members of the Liddy Shriver Sarcoma Initiative becomes a godsend. Over the last decade, Bruce Shriver and his colleagues have helped scores of patients and families worldwide in a multitude of ways, ranging from lending a sympathetic ear to providing guidance regarding who, when, why and where to go see and consult with, to educating the sarcoma community about new developments. Bruce and his colleagues have been active participants in national and international meetings, interacting closely with clinicians and physician scientists, and helping to raise awareness and funds to support innovative research. For all of this and more, they have the most heartfelt gratitude of the entire sarcoma community.
Stephen Lessnick, MD, PhD -
Huntsman Cancer Institute
The Liddy Shriver Sarcoma Initiative has been instrumental in supporting my development as a researcher and in driving our research program forward. I was particularly fortunate to obtain LSSI funding during the earliest portion of my research career. That funding allowed us to build a solid foundation in Ewing sarcoma research, and that foundation served as a jumping-off point to obtain additional funding, including funding from the National Institutes of Health. This support allowed me to develop into an independent researcher with a complete focus on Ewing sarcoma. Equally as important was our use of the LSSI funding to test some of our earliest hypotheses, and to refine our ideas in a way that we hope will ultimately have a deep impact on patients with Ewing sarcoma.
Ella Mae Byrne - Celebrating the Life of Steve Byrne
Congratulations on 10 years of educating the world about sarcoma. Our journey began with the Liddy Shriver Sarcoma Initiative four years ago, when we were organizing our first fundraiser and needed an organization to give the money to. I typed "sarcoma" on the search bar, and sarcomahelp.org popped up. After reading all the info, we knew we had found the right place. After talking to Bruce Shriver about the event, he gave us valuable information about sarcoma cancers. Each year when we celebrate the life of Steve Byrne at our annual fundraiser we spread the word about rare cancers, especially clear cell sarcoma, which is what Steve had. Four years later we still send all the proceeds from our fundraisers to the Liddy Shriver Sarcoma Initiative in memory of our son who loss his battle to clear cell sarcoma in 2008. Steve may have loss his battle to clear cell sarcoma, but we through the Liddy Shriver Sarcoma Initiative are hopeful that someday a cure and/or treatment can be found to help others going through what Steve went through. Congratulations again on 10 years of helping, not only us, but the world in understanding exactly what sarcoma is and how many subtypes there are.
Sharon Anderson, MSW - LMSarcoma Direct Research Foundation
The Liddy Shriver Sarcoma Initiative has made a huge contribution to the sarcoma community of patients, caregivers, researchers and doctors. ESUN has always been an excellent source of information and education. LSSI has contributed thousands of dollars to fund much needed and very worthy research projects. LMSarcoma Direct Research has benefited greatly from our joint collaborations and hope to continue to do so for the next ten years!
Tracy Heiman, Supporter
Congratulations on 10 years of sarcoma awareness, in depth information and support for our special community. Our young son's story is very common in the sarcoma community - his rare sarcoma was misdiagnosed for years. As parents, the word "sarcoma" was never shared by our medical staff. I remember when we finally learned his mystery lumps were a "sarcoma" we found our way to the Liddy Shriver Sarcoma Initiative. Finally, his progressing condition and the actions needed to treat him properly became evident because of the wealth of information shared on your website. Your information became our education on directing the right path to proper care for our son. Thank you for connecting the international community of medical professionals for collaboration and research - it's making an impact. We now have found seven active families around the world with our son's same subset of sarcoma, and many more friends who can relate and share stories. I will continue to share awareness of your critical work to those who need information or support. Thank you! Liddy's legacy sheds light of hope and inspiration for us all!
Torsten O. Nielsen MD, PhD, FRCPC - University of British Columbia
The Liddy Shriver Sarcoma Initiative has brought me together with like-minded researchers around the world, helping to create a critical mass of knowledge and skill sets. This has allowed us to do more, and more quickly, to help understand the fascinating biology of sarcomas and, more importantly, how we can use the science to help doctors, patients and their families. ESUN in particular has created a rapid forum for presenting and discussing important scientific and clinical developments in a way that is accessible to the entire sarcoma community.
Stefano Ferrari, MD - Istituto Ortopedico Rizzoli in Bologna, Italy
"Have you checked the Liddy Shriver website?" This is now a quite common suggestion given to junior colleagues who want to approach the sarcoma field. The Liddy Shriver sarcoma initiative is peculiar and highly interesting not only for clinicians and researchers, but also for patients. In this regard, for me it is an important task the translation in our language (Italian) of some of the chapters describing these rare disease. Congratulations on this 10th anniversary. All the best wishes for many other years of activity, always directed to the dissemination of the knowledge of the fascinating and hard world of the sarcomas.
Jane Caruso, Supporter
When my daughter was initially diagnosed, the Liddy Shriver Sarcoma Initiative provided us with information, contacts and hope. For my daughter's 25 birthday, she made a request from all of her Facebook friends to make donations to the Initiative in her honor rather than sending her a gift. She was able to raise over $1,500, and she was so excited to be able to spread the word about this wonderful organization. Unfortunately she passed away from her disease just nine months after diagnosis, but we will always be grateful for the personal connection we were able to establish with Beverly and Bruce and for the ongoing support they continue to offer in the field of sarcoma research. This organization continues to offer help and hope in ways like no other. Thank you for all you do.
Matt van de Rijn, MD, PhD - Stanford University
Ten years, that is amazing, what an incredible achievement! In 2004 and 2008 I received Initiative support for research in sarcoma. This year I was awarded a grant that the Liddy Shriver Sarcoma Initiative funded together with LMSdr (Leiomyosarcoma Direct Research) for work on a project on LMS. Over the past decade the Initiative has therefore contributed very significantly to the research in our laboratory at Stanford University. This kind of support is crucial for laboratories such as ours as funding for rare disease is often hard to obtain.
The initiative has developed a new kind of grant that fosters interaction between different sarcoma laboratories. This is a unique approach that can be expected to yield valuable results.
In addition the Initiative serves an enormously important role by showing patients with sarcoma that they are not alone, by providing information through ESUN about what sarcoma is and what research might bring us and by offering patients and their families and friends a way to get involved through Team Sarcoma.
Marlene Portnoy - The Desmoid Tumor Research Foundation
It is amazing to think of how much you have accomplished in just 10 years! We are still grateful for all of your encouragement and help when we founded the Desmoid Tumor Research Foundation. Countless patients have been helped by your sarcoma education, awareness and research. So, a heartfelt congratulations!
Mark Furman, Supporter
When our son was first diagnosed and we were told that he had Ewing's sarcoma, we were clueless. We had no idea what that meant, what our options were, or what outcomes can be expected. Fortunately my internet search brought me to the Liddy Shriver Sarcoma Initiative. Even eight years ago, the website had a wealth of information. It was a great source of information and comfort as we journeyed down the treatment and eventually post-treatment path. We are grateful to the Shrivers for investing so much of themselves in this incredible resource as a tribute to their daughter, Liddy. Thank you, and we wish you many more years of strength to continue the great work you are doing.
Jeffrey A. Toretsky, MD - Lombardi Cancer Center
Many families and health care providers have expressed their gratitude that ESUN exists and is so comprehensive. While the number of Internet hits is one measure of success, the impact of knowledge -- especially clear, concise, and accurate information -- can really only be judged from personal stories of connection.
The Liddy Shriver Sarcoma Initiative provided my research a needed support while I was struggling to get NIH funding for a project to study Ewing's Sarcoma. At the time, the Shriver funding allowed us to obtain critical additional data to support an ultimately successful NIH R01 application. That grant was funded for five years with total costs of $1,500,000. By publicizing the grant support that the Liddy Shriver Sarcoma Initiative provides, a wonderful synergy occurred that I could not have predicted. The seed funding that you provided to Dr. David Loeb at Johns Hopkins Hospital enabled investigation of the Ewing's Sarcoma stem cell. At that time, the NIH requested proposals that both identified a cancer stem cell AND targeted the stem cell. Dr. Loeb and I performed a successful experiment together, which provided preliminary data that led to second funded R01 that we currently share with $3,000,000 in total costs over five years. We recently had a manuscript accepted for publication in the prestigious PLOSone on-line/open access journal. Our collaborative work continues and I anticipate future publications together. In total, you have provided $100,000 of support to both Dr. Loeb and me that led to $4,500,000 in NIH funding and a high-impact publication.
Cliff Blaker, Supporter
Congratulations and thanks to the folks at the Liddy Shriver Sarcoma Initiative on 10 years of service. They've done a great job of calling attention to this relatively little-known family of diseases. The Liddy Shriver Sarcoma Initiative has been a beacon of hope and strength to all those whose lives have been touched by sarcoma. As a sarcoma survivor, I'm grateful for the support and the education provided by the Initiative.
Brian Rubin MD, PhD - Cleveland Clinic
Congratulations on the Liddy Shriver Sarcoma Initiative's 10th anniversary. I wanted to especially thank you for supporting sarcoma research, including my own work. Your funding is the seed that allows sarcoma research to grow to the point where it can be submitted for NIH funding; therefore, it fills a crucial void for incubating sarcoma research. Thanks so much for being a champion of sarcoma research and an integral member of the sarcoma research community.
Judith V.M.G. Bovée, MD, PhD - Leiden University Medical Center in the Netherlands
First of all, congratulations with the 10th anniversary of the Liddy Shriver Sarcoma Initiative. I think the Initiative has done a wonderful job, and I cannot add anything to the enormous achievements that you nicely summarize in your infographic. I think you and your team can be very proud of what you have achieved. For me personally, the Initiative has been of tremendous importance in setting up collaborations and joining forces with sarcoma expert teams across the ocean, providing me with a global platform for my sarcoma research. The collaboration with MD Anderson as well as the University of British Columbia in the myxoid liposarcoma consortium has been great...I think the collaboration will lead to many more good things even beyond the grant period.
Diane Luli, Supporter
First, I would like to say thank you for the 10 years of the giving, caring & support you have shown. Some years ago, after my very-loved niece passed away of PNET, I was charged with finding the "right" organization to give the proceeds of our fundraiser to. I really wanted to make the best choice possible as a lot of people worked hard to make this event successful. I knew instantly that the Liddy Shriver Sarcoma Initiative was more than worthy of our donation. You all give so much of your personal time and quite obviously care about everyone who is affected in every way by sarcoma. I know that your efforts are reaching so many that it makes me feel special to be a part of this cause. We will continue to support the Liddy Shriver Sarcoma Initiative because we care and so do you.
Lor Randall, MD, FACS - Huntsman Cancer Institute
The Liddy Shriver Sarcoma Initiative has been a pioneering electronic colloquy for physicians, patients and families to better understand the global community of sarcoma care. As a physician-surgeon specialist, I have been fortunate to connect with the greater global sarcoma society who suffer from or care for those afflicted with these rare and often deadly cancers. Our efforts are enabled, and bettered, because of this Initiative.
Dianne Wolfington, Supporter, Mother of David (February 1962 - March 2013)
The journey of sarcoma is made easier by people like Bruce and Beverly who know what the road is like and share so willingly. Thank you for turning something as painful as the loss of Liddy into a positive for so many. The information and support you give has been a blessing in my life. Death is a part of life that we all have to deal with, and anything we can do to make the journey easier for others is important. Thanks for making a difference.
Laurence H. Baker, DO - University of Michigan
The efforts of the Shrivers in establishing and maintaining this Liddy Shriver Sarcoma Initiative simply cannot be measured with proven metrics of success. Yet, anyone who knows Bruce and of this initiative is surely uplifted and encouraged to participate in this struggle. As a medical advisor I am very proud to be associated with this fine work.
Wei Zhang, PhD -The University of Texas M.D. Anderson Cancer Center
I met Bruce Shriver 5 years ago. Since then we have enjoyed a close collaboration in the fight against sarcoma. My colleague, Dr. Jilong Yang, a sarcoma surgeon scientist working in China, and I have worked closely on gaining genomics and molecular insight into several types of sarcoma, including gastrointestinal stromal tumor (GIST), leiomyosarcoma, osteosarcoma, and malignant peripheral nerve sheath tumor (MPNST). We have been very fortunate our research was supported by two research grants from the Initiative. These grants have allowed us to reveal a number of critical oncogenetic events that are important for osteosarcoma and MPNST, resulting in publications in major oncology journals. We know these studies have made a difference to patients when on several occasions patients emailed us to acquire reprints of our articles. We are not only appreciative of the funding but also of the great educational efforts of Dr. Shriver in his impressive periodical. We are very pleased that Dr. Jilong Yang and his colleagues in Tianjin have had the opportunity to contribute to this effort by translating close to 10 articles into Chinese for publication at SarcomaHelp.org. We warmly the Liddy Shriver Sarcoma Initiative on its 10th annivesary. With your effort and support, the sarcoma research community will continue to make discoveries that will improve patients' lives.
Brenda Sieglitz, Supporter
Liddy Shriver Sarcoma Initiative helped my late husband Kevin and me to feel more hopeful in his fight against angiosarcoma. The community of support has been incredible and is the reason I formed Team Sarcoma: Keepin' it Kevin. Thank you so much for all you do on behalf of sarcoma patients and their families.
Françoise Rédini, PhD - Faculty of Medicine in Nantes, France
By funding part of my research, the Liddy Shriver Sarcoma Initiative gave me the great opportunity to develop a translational project on Ewing's sarcoma, leading to a clinical trial for Ewing's sarcoma patients. My research focused on the involvement of bone microenvironment in the development of primary bone tumors, especially Ewing's sarcoma and osteosarcoma. Thanks to Initiative funding, I developed preclinical studies on the therapeutic interest of bisphosphonate in Ewing's sarcoma animal models. The promising results obtained in these studies constitute the rationale for the Euro Ewing 2012 clinical trial that will begin next December. In addition, ESUN articles published in several languages are a great help for the scientific community working on sarcomas.
Charles Keller, MD - Oregon Health & Science University
Our laboratory is grateful for the forward-thinking work of the Liddy Shriver Sarcoma Initiative in bringing the patient community into partnership with the medical and research communities. The Initiative has been the model upon which our laboratory's outreach has been based. Congratulations and thank you, Bruce and Bev!
Jill Elmhorst, Supporter
Thank you for setting up this site. I feel connecting with others affected by sarcoma, and it has been an invaluable resource for me. My son was the one with sarcoma. Some of the other moms on this site really did help get me through some dark days. I truly feel that these moms and others with sarcoma are the only ones who really get it. I pray for a cure for all of us. Until that day, I will raise awareness, help another mom or family and do what ever I can to help eradicate this horrible thing called sarcoma.
John A. Martignetti, MD, PhD - Icahn School of Medicine at Mount Sinai
The research funds provided by the Liddy Shriver Sarcoma Initiative are making an immediate impact in helping us to cross a narrow and treacherous bridge: traveling from a novel discovery in osteosarcoma genetics to establishing the necessary additional scientific framework and collaborations required prior to seeking federal funding for future research. Without the critical financial assistance provided by the Liddy Shriver Sarcoma Initiative, a promising finding may never move beyond the laboratory bench towards deeper understanding and testing of a potential therapeutic strategy.
Linda Heredero, Supporter
I lost my 22 year old son to Osteosarcoma on June 11, 2010. When he was first diagnosed, I had never heard of sarcoma and told him it sounded like something that could be easily fixed. Little did we know... After he passed away, I heard of the Liddy Shriver Sarcoma Initiative and decided to research to see what it was about. I wish I had found them when my son was initially diagnosed. This organization has given me hope for the possibility of a cure in the near future and hope for the hundreds of patients who are diagnosed each day who live with the uncertainty of what will happen next. Having the Liddy Shriver organization to support them while they battle this disease gives these patients a reason to keep fighting.
Igor Matushansky, MD, PhD - Novartis Pharmaceuticals Corporation
Milestones are not merely happy times for celebration; they are also often solemn times for reflection. We (and that includes you) have truly come far in making significant advances in this disease. Fifteen years ago, doxorubicin was arguably all there was. Today, at least a dozen new, targeted, state-of-the-art drugs are available for the treatment of various sarcomas, and more are coming. The Liddy Shriver Sarcoma Initiative is, in part, responsible for some of these accomplishments. Their scope of help is extensive, from funding basic science projects on the origins of sarcomas to sponsoring patient/family awareness days with balloons, magicians, and performers to lift everyone's spirits. The Liddy Shriver Sarcoma Initiative is there: helping, promoting, and paving the way to a cure.
The Hawkins Family, Supporters in London, UK
Congratulations, Bruce and Beverly on reaching this key milestone, a time to reflect with admiration and awe on the enormous contribution you have made to the shared knowledge of and research into sarcoma globally. Turning energy and commitment into a practical source of knowledge and inspiration for researchers, clinicians and patients worldwide. But more than this, you have generated hope and opportunity to thousands of families around the world but with a personal touch of humanity and empathy. As a family, we have been part of your journey since my daughter was diagnosed with MPNST in 2007. Since then it has been a rollercoaster ride, but LSSI's help and guidance not only gave us hope in the depths of despair but opened up the option of proton radiotherapy at MGH, not available in the UK, which may well have saved her life. The struggle continues, but LSSI remains a constant beacon, guiding us along a very rocky road. We, as a family, will be eternally grateful for what LSSI has meant for us at both a practical and emotional level.
Raphael Pollock, MD, PhD -The University of Texas M.D. Anderson Cancer Center
Congratulations of the 10th anniversary of the Liddy Shriver Sarcoma Iniitaitve. Your support of research to create sorely needed new sarcoma therapies, coupled with the pioneering website and ESUN as a novel means of patient and professional dissemination, has filled a critical void. Best of good luck in future Liddy Shriver Sarcoma Initiative endeavors, and count on the entire sarcoma community for our continuing strong support!
Crystal L Mackall, MD - National Cancer Institute
We live in an age where raising awareness is the essential first step toward conquering disease. Awareness breeds a sense of urgency, motivates groups of people toward a common goal, and puts resources into the hands of those who can make a difference. Raising awareness of the scourge of sarcoma is not simple. The disease is complex and multifaceted, and the toll it inflicts on its victims cannot be easily reduced to a sound bite. But through a combination of diligence, expertise and creativity, the Liddy Shriver Sarcoma Initiative has raised awareness worldwide regarding the challenges and opportunities facing caregivers, researchers and patients with sarcoma. By raising awareness of sarcoma as a disease, the Liddy Shriver Sarcoma Initiative has led the way in taking the essential first step toward eradicating this killer of young and old alike.
Copyright © October 2013 Liddy Shriver Sarcoma Initiative.