Jason Sicklick Deb MelikianMelikian/Sicklick Partnership Focused on GIST Research

The path to patient advocacy is a complex and diverse one. It is not uncommon for the catalyst to be that a loved one is diagnosed with a disease, catapulting someone into the world of advocacy out of both caring and necessity. It is rare that the path would also lead to a powerful partnership with a medical professional, and the drive and determination to find ways to further research for a rare disease.

For Debra Melikian, mother of a young patient with SDH-deficient GIST, that path would first lead her to The Life Raft Group and to a GIST Day of Learning (GDOL) that would alter the course of her life and her son’s life forever.

At that GDOL, she met Dr. Jason Sicklick of Moores Cancer Center at the University of California, San Diego, a surgeon, GIST expert and clinical researcher. It was the beginning of a unique partnership that is featured in the Patient Partners section of RARE Revolution, a digital magazine dedicated to giving a voice to those affected by rare conditions and the charities that represent and support them.

Read the article

For more resources on SDH-deficient GIST:

SDH-deficient GIST FAQ Sheet

Read here about our Pediatric & SDH-Deficient GIST Consortium, an international group of researcher, doctor, pathologists, and patient advovates, collaborating to find more treatment options for patients with SDH-deficient GIST.

Pediatric & SDH-Deficient GIST Consortium