Rare Disease Day 2017

Posts Tagged ‘sarcoma drug development’

Rare Disease Day 2017

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America.   Two years ago, I wrote a blog post in honor of Rare Disease Day.  Entitled, “Shedding Light on the Forgotten Cancer,” it was a piece meant to raise awareness for a little known disease on a day designed to bring attention to a community of patients that are so often overlooked. It seems appropriate to share that post again as we are near Rare Disease Day 2017. On the last day of February, the rare disease community will collectively join voices and…  Read More »

A Window of Hope

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America.   There was a long period of time where there seemed to be little to no progress in finding ways to battle the forgotten cancer known as sarcoma. This period of time lasted for decades, though it probably felt more like centuries to the patients and families that were desperately looking for treatment options that never seemed to come. And while sarcoma still takes too many of our loved ones from us, progress in our fight against this terrible disease is finally being…  Read More »

Hope Through Advocacy and Policy

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. As I write my last blog for the year, I can’t help but to think about the time of year and what it means for everyone. The Holiday Season is a time of hope and renewal, a time to spend with family and friends, and time to celebrate the special moments and accomplishments of the year. It is also a time to embrace the hope and excitement of the new year. With that said, I’d like to share with you the outcomes of…  Read More »

A Note of Thanks

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. In honor of Thanksgiving, I would like to take a moment to share my heartfelt thoughts of gratitude. I know that I speak for all of the staff at the Sarcoma Foundation of America with this list of thanks. Our work to find the cure in our time is inspired by the sarcoma community and is accomplished thanks to the help we receive from those who share the same goal of improving the lives of those touched by sarcoma. Thank you to… The…  Read More »

Filling the Research Gap

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. At the heart of the Sarcoma Foundation of America’s (SFA) mission is research. The needs of the sarcoma community are many – the need for more awareness, more education, and more resources is unquestionable. And while the SFA places a high priority on those needs, we know that one of the greatest needs of all is for increased research. Nothing will ultimately change for sarcoma patients and their families without increased and sustained research. This means that we advocate for increased federal funds…  Read More »

Medical Innovation Provides Hope to Pediatric Sarcoma Patients

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. As I write this blog, we find ourselves in the midst of Childhood Cancer Awareness Month, a time to educate the public about the realities of childhood cancer and to draw attention to the need for more pediatric cancer research.  For the Sarcoma Foundation of America, Childhood Cancer Awareness Month is also a time to remind everyone that sarcomas are not just a cancer of adults, but also of children and young adults.  Sarcomas account for 15 – 20% of all childhood cancers, a…  Read More »

Hope and Help

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. Hope and Help is my patient advocacy motto. I believe that one can characterize patient advocacy efforts into two buckets: activities focused on Hope and activities focused on Help.  Hope for finding a cure and Help with the patient journey.  Historically patients had the smallest voice in terms of advocacy, but that is not the case anymore.  The accomplishment of the patient advocacy community in raising the impact and importance of the patient voice is a testament to how a group of people…  Read More »

Bringing New Therapies to Market

 Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America.   Over the past few weeks we’ve seen the Food and Drug Administration (FDA) make decisions regarding some investigational therapies for sarcoma.  In that time, one investigational new drug received priority review status, which cuts the drug review period from 10 months to six months.  Another was given fast track designation.  This designation is also intended to expedited the review process for “serious conditions with unmet medical need.”  Certainly sarcoma falls into that category. The Sarcoma Foundation of America (SFA) has long been…  Read More »

Tweet chat on drug development

Sarcoma medical oncologist Laurence H. Baker, DO (@LaurenceBaker2), will answer your questions on drug development during a 45-minute tweet chat on Thursday, September 24, at 9 pm (EST). Dr. Baker is a professor of internal medicine and pharmacology at the University of Michigan Medical School in Ann Arbor. He has served as director for clinical research and hematology/oncology at UM’s Comprehensive Cancer Center; chairman of the Southwest Oncology Group, the largest clinical trials organization in the United States; executive director of the Sarcoma Alliance for Research through Collaboration, a national cooperative group that runs sarcoma clinical trials; and president of the…  Read More »