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.
In her past life, she was the social media strategist for the Hashimoto’s Encephalopathy SREAT Alliance. Kimberly is a patient herself, diagnosed with hypermobile Ehlers-Danlos syndrome almost two years to the date of the first #Dazzle4Rare event. She also survives and thrives with Postural Orthostatic Tachycardia syndrome and a few comorbid friends.
When it comes to #Dazzle4Rare, she wears a lot of hats.
Judy’s compassion knows no bounds. In addition to tweeting and sharing on social media for #Dazzle4rare 2021, she will also be taking an active role helping reach out to organisations to participate this year! She has been helping folks all over the world for years now and we love her for it.
Thank you, Judy!
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 when she can, she helps us out too. She’s got a big heart. We can’t be more grateful for all she does and all the love she gives!
Past Team Members
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.
John is an expert patient, an advisor, and all-around good person. He knows a lot about Whole Genome Sequencing (WGS) so you should get to know him.
Lydia is a state ambassador to the National Organization for Rare Disease (NORD) from Maryland. She is taking a step back this year. We wish her the best and look forward to working with her again in the near future.
Whitney is a CRPS warrior! Whit joined us last year to help with email outreach and communication. We appreciate all she has done and continues to do in rare and chronic illness communities!
Erica is a fellow patient and advocate , as well as a loving Mom. She joined us in 2020 to help snazzy up our social media graphics and we’re grateful for her contributions.