Whether as a patient, family member, volunteer, donor, physician, or researcher, our connection to chordoma gives us the chance to make an uncommon impact on the pursuit of better treatments for this rare disease.
Our 2014 Uncommon Award honorees were recognized at the European chordoma patient and research conferences in June. We are grateful for the uncommon contributions of these individuals to our cause:
Dr. Silvia Stacchiotti – Istituto Nazionale Tumori
Dr. Stacchiotti’s is a medical oncologist who specializes in the treatment of patients with Cancer of bone and connective tissue such as cartilage, fat, muscle, and blood vessels. Chordoma is a type of sarcoma., including chordoma. Aside from having one of the most active chordoma practices in the world, she has brought together a network of expert physicians throughout Europe dedicated to working together to provide high-quality and coordinated care to chordoma patients. Working with this group, last year she spearheaded the creation of guidelines for the diagnosis and treatment of chordoma, which will lead to improved and more consistent care for patients across the world. She has also been instrumental in planning a multi-institutional European patient registry as well as several upcoming multi-institutional clinical trials.
Dr. Adrianne Flanagan – University College London
As one of the world’s leading bone and soft tissue pathologists, Dr. Flanagan, has made seminal discoveries about the genetic underpinnings of several sarcomas, including chordoma. Her study of the chordoma genome has yielded major insight into how chordoma forms, and, potentially, how to effectively treat it. In particular, she identified a genetic variation (known as an SNP) in a A segment of genetic material that has a particular function. Humans have approximately 25,000 different genes. Every cell in the body has the same set of genes, however, different genes are turned on in different tissues, and at different times. called A gene that makes a protein, also called brachyury, that is present at high levels in nearly all chordoma tumors., which is present in 97% of chordoma patients. This discovery confirms that brachyury plays a crucial role in the formation of chordoma and may be a potential therapeutic target.
Norma Jones – Survivor
Since her own diagnosis in 2002, Norma has provided extraordinary support to other chordoma patients and their families. She started as a co-manager for a chordoma support website and is currently a member of the Foundation’s Education and Outreach committee and a Peer Connect peer guide. She has also participated on the planning committee for the last four Chordoma Community Conferences. “I have been blessed to know so many courageous and optimistic people,” says Norma. “They have all enriched and given meaning and purpose to my life.”
Ian Laird – Husband of Patient
Catronia Laird – Daughter of Patient
Carolyn Harley – Friend of Patient
After losing their beloved wife, mother, and friend to chordoma in 2008, Ian, Cat, and Carolyn decided to honor Allison Laird’s memory by organizing the Purple Aster Concert and Silent Auction. The annual event, held in Calgary, Alberta from 2008 to 2013, regularly drew crowds of more than 100 music lovers and friends to hear local professional musicians and learn more about the need for chordoma research. Over the years, Ian, Cat, and Carolyn have helped raise more than $55,000 to support the search for a cure.