Amid Aaliya’s relentless roller-coaster of health detours, my stumbles, sinkers & having Helen hold the fort intact when both of us helplessly derailed off the patient leading tracks, we are humbled to mark these mind-blowing milestones & swing into the momentum of 2022 hoping the past year of efforts proves beneficial to all in our community 💙
To every single person who backed us up either in the form of prayers that hit its target, monetary means, actively assisting hands-on with work, encouraging words by commenting, liking & sharing our posts to spread that much-needed awareness. Please know we appreciate you & your efforts which may seem small do not go unnoticed & unrewarded.
As we step into another smashing & successful time, we’d like to acknowledge & express a heartfelt
Thank you to @rarediseasessa for being our rock support & directing us expertly through every cause. Without your continuous guidance, none of these superb strides would’ve been possible & fruitful.
Thank you to all patients & health professional partners for being here, opening & broadening the scope for brand new opportunities, initiating conversations that matter & engaging with us by amplifying your voices for the needs of the underprivileged.
Thank you to all our well-wishers & contributors for your heartwarming acts of kindness which have cheered & aided us in succeeding thus far 🥰
As Aaliya often says:
𝐓𝐞𝐚𝐦 𝐰𝐨𝐫𝐤 𝐦𝐚𝐤𝐞𝐬 𝐭𝐡𝐞 𝐝𝐫𝐞𝐚𝐦 𝐰𝐨𝐫𝐤 🤝
Here’s to many more wonderful collaborations in the year ahead 💃💃💃
● Helen Van Niekerk joined forces with our Dysautonomia ambassador team which now totals the maximum amount of three.
● The building of a healthcare registry (in PDF format) for the guidance of our support group & easier accessibility to practitioners who are acquainted with Dysautonomia.
● Guidelines to maintain respect & unity among all group members (In editing)
● Successful participation & pooling in book resources for Imagination Stations at hospitals where kids & adults cannot reach out to reading material.
● Logo legacy – our official branding & representation completed & gifted by Kara La France after six months of designing discussion in the works.
● Aaliya co-hosted a Rare Room session with Megan Toni on IGTV discussing all things relative to Dysautonomia while shining a spotlight on Ehlers Danlos Syndrome.
● Expanded our social platforms & services to Facebook, LinkedIn & Twitter
● Attended the four-day annual Dysautonomia International Conference & posted excerpts of the pertinent information on our social pages for the benefit of followers.
● Special service by EMS providers for patients only within our group – proceedings in this regard are still underway.
● Extended approximately 70 email invites to medical personnel for the CME course hosted by Standford Med.
● Prepped extensively for the Twitter chat co-hosted with SA Heart Association on Sept 28 – discussing the effects of LC (long covid) & post-viral syndromes such as POTS.
● Awareness month facts for public education & social media topic prompts
● Bookmarks designed for TDP books with our social handles & contact details
● Brainstormed ideas for coordinating a viewing of Behind The Visible film at hospitals/networking with med students
(Planning to be resumed in 2022)
● Khadeeja – Participated in a seven-session EDS ECHO Advocacy PP9 program hosted by The Ehlers Danlos Society America & received a certificate of attendance.
● The Dysautonomia Project book campaign was completed after 15 months of laborious planning.
SUPPORT GROUP GROWTH:
As of 29/12/2021 – We are 21 members. Commenced the year as 10 & during the year, 11 joined 💙