TREND Community Rare Leaders – Introducing our Guest Bloggers

Maria Picone
Maria Picone

In the coming months we will introduce you to some of the leaders who are amplifying their community’s voices through their partnership with TREND. This month we welcome to the TREND team Rachelle Cook, a leader in the catecholaminergic polymorphic ventricular tachycardia (CPVT) community and Matthew Horsnell, a leader in the narcolepsy community.

Meet Rachelle…
Rachelle is a recent graduate of the Rehabilitation Science and Technology at the University of Pittsburgh.  Her lived experience with CPVT, as a patient and community leader, led her to a career in assistive technology. She’s been involved in advocacy since 2013 when she and her mother started the CPVT Kids & Families Sudden Death Arrhythmia online support group. She is passionate about accessibility and assistive technology to improve quality of life.

Fun fact: Rachelle is an avid rower and rowing played a key a role in her diagnosis. At age fifteen she passed out halfway through a 2000-meter race. She hasn’t let CPVT keep her from enjoying the sport she loves, continuing to row for the last eight years following her diagnosis.

In January 2020, TREND partnered with Rachelle to create the Catecholaminergic Polymorphic Ventricular Tachycardia Community Voice Report.

Meet Matt…
Matt is a father of three living with the type 1 narcolepsy (narcolepsy with cataplexy).
He’s been with his partner, Heather, since 2020.

Matt serves as a facilitator for Wake Up Narcolepsy online small groups. His advocacy focuses on narcolepsy and mental health awareness and legislative efforts. He’s a Rising Voices of Narcolepsy graduate, a leading legislative advocate, and a presenter for “Narcolepsy Nerd Alert” for Project Sleep. He is a spokesperson for Know Narcolepsy and frequent blog writer. Matt also serves as a co-host for #NChat on Twitter.

Fun fact: Matt has the longest hashtag in narcolepsy: #worldsstrongestpersonhavingnarcolepsywithcataplexy and his Mom believes he is the most handsome bearded person living with narcolepsy.

This month, TREND is partnering with Matt, Wake Up Narcolepsy, and Feri Ascencion, founder of PWN4PWN, to create the Narcolepsy Community Voice Report.

Stay tuned for blog contributions from Rachelle and Matt in the coming weeks and months.