Team work really does make the dream work!
Without our team of hard-working and dedicated volunteer patient advocates, we wouldn’t be able to do everything we hold dear.
#Dazzle4Rare Founder, Host of Signalise: a Dazzle4Rare podcast & Primary Contact
In her past life, she was the social media strategist for the Hashimoto’s Encephalopathy SREAT Alliance. She has worked in medical device marketing, biotech, and of all things, Insurance, in her professional career. Because of this experience, she’s been able to work closely with some of our co-hosts such as Poland Syndrome Support UK, Ataxia and Me (Wales), and other small UK-based non-profits.
Kimberly is a patient herself, diagnosed with hypermobile Ehlers-Danlos syndrome in 2018 almost two years to the date of the first #Dazzle4Rare event! She survives and thrives with Postural Orthostatic Tachycardia syndrome (PoTS), a few comorbidities, and some undiagnosed stragglers.
When it comes to #Dazzle4Rare, she wears a lot of hats.
Kerry Wong
[Bio coming soon!]
Tytina Sanders-Bey
[Bio coming soon!]
Past Team Members
Expert Patient, Advocate, & Advisor
Kimberly Amelia passed in February of 2020. Her contributions to Dazzle4Rare were immense and we could not have reached the heights that we did without her. She was truly a jack of all trades. No one can replace her in our movement or our hearts.
Advocate & Advisor
Judy’s compassion knows no bounds. She has been helping folks all over the world for years now and we love her for it.
Thank you, Judy!
Social Media Volunteer & Expert Patient Advocate
Holly has been a help to the Dazzle4Rare family for a few years. We’re always grateful for Holly’s input, ideas, and support!
Advocate & Advisor
Lydia is a state ambassador to the National Organization for Rare Disease (NORD) from Maryland as well as being involved in other organisations based in the United States. Because of her support, she’s referred organisations such as WAGR Syndrome International and Rare Disease Ghana to the Dazzle4Rare event in the past.
Expert Patient & Genomics Advisor
John is an expert patient, an advisor, and all-around good person. He knows a lot about Whole Genome Sequencing (WGS). We miss his input and all-around passion for rare disease advocacy and innovation.
Social Media Graphics
This is Lisa! She has been the wind beneath our wings since we started in 2016 under the HESA umbrella. Lisa still volunteers for HESA and has a big heart. We can’t be more grateful for her love and support!
Organization Communication and Outreach
Whitney is a CRPS warrior! Whit joined us as a host for our live streams on Instagram with Central Nerve Pain Centre and others during D4R 2020.
Social Media Graphics
Erica is a fellow patient and advocate , as well as a loving Mom.
