April is Trisomy awareness month so we want you to hear from one of the most out-spoken patient advocates in this space, Sarita Edwards. Sarita is the co-founder of the E.WE Foundation, a charity with the goal of supporting families with a loved one diagnosed with Trisomy 18. Before that she had a son Elijah, who was born with this condition. At the time of Elijah's diagnosis, very little was known about Trisomy 18 and it was deemed incompatible with life with a life expectancy of only 2 years which resulted in some challenges in getting the proper care. Elijah is now 5 years old and continues to defy the odds that were set against him and his family at the time he was diagnosed.

Today Sarita is working to change the perception of Trisomy 18 among healthcare providers and also supporting other Trisomy 18 families through various programs at the E.WE foundation. You can learn more details at their website.

Stay up to date with Sarita's work by listening to her podcast series "Being Rare". Sarita puts out 1-3 minute episodes covering a range of topics that any patient advocate will find interesting.

Back in 2013, Dr. Scott Ernst and Dr. Femida Gwadry-Sridhar both recognized some problems with the way people were conducting research for melanoma. Collaboration was lacking and crucial patient data was being siloed and not shared amongst the research community, which prevents the full potential of this data from being realized.

The two teamed up to create the Global Melanoma Research Network (GMRN). The first collaborative research network for melanoma and worked alongside different cancer centers across Canada begin collecting, centralizing and standardizing their melanoma patient's data. Today, the registry has grown to be one of the largest melanoma patient registries in the world with over 5,000 patients. Dr. Ernst continues to publish findings from the registry and care for Canadians living with melanoma. While Dr. Gwadry-Sridhar created Pulse Infoframe which specializes in building registries and natural history studies similar to GMRN.

Join Dr. Scott Ernst, Dr. Femida Gwadry-Sridhar and Joshua as they break down why and how they went about creating GMRN, the difference it has made for melanoma research and the patient community, as well as where they hope to take this registry in the future.

A positive mindset is one of the keys to living a happy life. But maintaining optimism in the face of adversity is much easier said than done. Especially when that adversity comes in the form of a rare medical condition diagnosis. However, our guest Dan “Dry Dock” Shockley is here to show you how he stayed positive throughout his battle with colorectal cancer. Dan received his diagnosis following a colonoscopy shortly after his 50th birthday after retiring from a long career in the Navy. Dan immediately shifted his focus to advocating for the colorectal cancer community and became a live case study to help educate both healthcare professionals and medical students. Join Joshua and Dan as they discuss his battle with cancer, how his career in the navy impacted how he approaches his advocacy work and how to always forge ahead with a purpose.

Stay updated with Dan’s work by following him on social media:

• Twitter- @dandrydock
• LinkedIn- @Dan Dry Dock Shockley
• Colon Cancer Prevention Project - https://coloncancerpreventionproject.org/