A new website officially launched by the Translational Genomics Research Institute (TGen) provides patients and their families with 24-7 access to essential and comprehensive information on Adrenocortical Carcinoma (ACC), a rare and deadly form of cancer.
Named in memory or Kirsten Sandstrom, Kirsten’s Legacy is TGen’s research and clinical program for defeating ACC. The site includes facts about ACC, links to valuable patient resources and the latest updates on progress being made by TGen researchers and clinicians studying ACC.
To all those who knew her, Kirsten was an extraordinarily caring and loving woman. As a wife, mother, daughter and friend, Kirsten displayed a level of grace and selflessness that lifted the hearts of her family and lent them strength as she endured a 21-month struggle with ACC that claimed her life in March of 2010.
As part of a $1.5 million gift to TGen in support of ACC research, Kirsten’s parents Gary and Barbara Pasquinelli of Yuma, Arizona, worked with their son-in-law Ed Sandstrom and TGen to establish Kirsten’s Legacy. The Pasquinelli’s made their donation as a challenge gift to help encourage others to support ACC research.
“We had trouble finding information on ACC, so we established the Kirsten’s Legacy website to provide timely information for patients, their families and friends as TGen pursues better treatments and moves toward a cure for this terrible disease,” said Gary Pasquinelli. “The website enables those dealing with ACC to know immediately that they are not alone — that there is hope— a place where you can get substantial information about ACC without having to go through what we went through.”
Prior to the Pasquinelli gift and the launch of the Kirsten’s Legacy website, ACC survivor Troy Richards established TGen’s ACC program and actively raised dollars for research through his Advancing Treatment for Adrenal Cancer (ATAC) fund.
In May 2005, Richards met with TGen Drs. Daniel Von Hoff and Michael Demeure to discuss establishing TGen’s ACC Research Program. Richards also developed a website and co-founded what is now the largest ACC support group on the Web. He continues to raise funds and be an advocate by helping patients worldwide to receive the best possible care.
After learning of the Pasquinelli gift, Richards and the Pasquinelli family chose to merge their efforts and today pursue a cure for ACC through the Kirsten’s Legacy program.
“The goal of the website, the entire program for that matter, is to educate others about ACC and support TGen scientists and clinicians,’’ said Troy Richards. “Our hope is that Kirsten’s Legacy continues the work we’ve started and paves the way to improved treatments and understanding of ACC, and ultimately, leads to a cure.”
ACC is rare: less than 2 individuals in 1 million are susceptible. When the numbers are that low, few federal or philanthropic dollars flow toward studying the causes or finding a cure. That means fewer advances in diagnoses or therapeutic treatments. Also known as cancer of the adrenal cortex or ACC, TGen scientists and clinicians conduct their work with a sense of extreme urgency, knowing the fight against ACC lingers and few institutions are working to defeat this deadly cancer.
“The Kirsten’s Legacy website will enable TGen to create a community of ACC patients and advocates around the world and to share our research progress and resources,” said TGen Foundation President Michael Bassoff. “The support of Troy Richards, the Pasquinelli’s and Ed Sandstrom, serves to remind us of the power and importance of collaboration, enabling TGen’s mission against ACC.”
TGen Drs. Kimberly Bussey and Michael Demeure lead a team of scientists and clinicians who, for the first time, have completed the first whole genome sequencing of ACC tumors. This offers new insight into the possible causes of this extremely rare and aggressive form of cancer by identifying all 3 billion chemical DNA bases of ACC tumors. Researchers compare the cancer DNA to a patient’s normal DNA to discover what’s different; what mutations might cause the disease.
The ACC research team at TGen is eager to work with all investigators on efforts to improve treatments for affected patients.
Visit Kirsten’s Legacy at: kirstenslegacy.org.