In this episode, I interview David, who is a fighter of Cowden Syndrome. David Ross is a patient advocate and rare disease male mental mental health collaborator. David's activism began in 2017 when he was diagnosed with a rare disease called Cowden Syndrome due to being given a letter from his mother about getting tested before she passed away due to having the same condition.
After a period of coming to terms with this he became committed to raising awareness and supporting others impacted by this condition by helping set up a support group and also applying to join the Pten Foundation International Family Council which looks to helping my rare disease community by raising awareness about Cowden Syndrome.
In 2020 he attended 3 virtual Eurordis rare disease schools and is currently on the Findacure mentoring program. His latest project has been to set up rare disease male mental mental health International zoom calls for patients and caregivers and has set up an online support group on facebook for males in 2021.
Some of David's honors have been the following: Find a Cure Mentoring Program (2021-22), Find a Cure Mentoring Program (2020-21), Male Mental Health International Zoom Calls (2020-Present), Eurordis Digital School (2020), Eurordis Summer School (2020), Eurordis Winter School (2020), and Clinical Trail Boston Children's Hospital (2018-19).
Follow along on his advocacy journey!
Email: mensrarediseasemh@gmail.com
