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.
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!
Whitney is a CRPS warrior! She will be joining us again this year on the outreach and communication side of things. If you get an email from her, please do reply!
Erica is a fellow patient and advocate , as well as a loving Mom. She will be joining us this year to help whip up the snazzy social media graphics we create for our co-hosts and participants.
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.
Judy’s compassion knows no bounds. There is no doubt that she’ll be tweetingand sharing on social media for #Dazzle4rare 2020! She helps folks all over the world and we love her for it.
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.