I just finished registering for an upcoming recorded session from the International Stroke Conference on Post-Acute Rehabilitation After Stroke: Getting It Right
The American Stroke Association for the second year now is offering this educational service for stroke survivors as part of Stroke Connection, marketed as an “Educational Program for Stroke Survivors, Caregivers and Other Consumers”.
Last year the event overlapped the International Stroke Conference (ISC) and offered survivors and caregivers free access to select sessions presented at the paid event. I actually attended many of the sessions, reported about it on this blog and also discussed it on the Know Stroke Podcast. The year, while ISC has already wrapped up there are some really interesting educational events still taking place as virtual Zoom sessions. They are currently running February 21 – March 3, 2022
Why the ISC is getting it wrong this year
Last year I reported on how this was such a great move forward for ISC and ASA because for the first time ever, stroke survivors, family members and other advocates with an interest in stroke and brain health were being allowed to have a seat at the table and to join in for select sessions at the 2021 International Stroke Conference. This year, same access opportunity but is comes blocked behind a pay wall. Why would you charge for educating the public especially survivors and caregivers who are struggling more now than ever? They need these science based educational opportunities or else they’ll turn to Dr. Google on the internet or anyone who says they have a fast fix to the answers they are desperately trying to find to improve their lives after a stroke.
For example, aftercare options following stroke, including post rehab care pathways, art therapy, brain health and others which you are offering for a fee now are really needed educational sessions that many survivors can’t pay for. There are some great sessions still in the lineup this week and many survivors and caregivers, will not be getting a seat at the table this year for these events. Here’s a link to the lineup of educational sessions available.
While the dollar amounts to attend each session seem small to most, $10 for each session, this amount is a barrier for many. Here’s one example from a family member of a stroke survivor that recounted to me some of the barriers families face in distress from the unpaid costs of surviving a stroke. This is one of the stories I am retelling in an upcoming book on survivors stories.
We tried everything for our son to give him the best rehabilitation options in the years following his stroke. My husband took a second job and I worked evenings but paying out of pocket for continued therapy and uncovered treatments left us desperate to meet our utilities and mortgage bills. We would go to the gas station to fill up a 5 gallon container of diesel fuel to put in our oil tank to heat our home through the winter because we could’t afford the minimum delivery costs our oil company was charging to come to our home.-Family of young stroke survivor
I’m using this real life example of a lived experience from a stroke survivor’s family to demonstrate that ten dollars does go a long way for survivors, especially now with global tension high and living costs climbing out of control.
I am fortunate
I am a stroke survivor that can pay the fee to have a seat at the table, but many others are far less fortunate. I’ve also personally donated over $20K with my and my families fundraising efforts over the almost 16 years since my own stroke directly or indirectly to the AHA/ASA with hope that I would not be writing this simple ask to the same organization I support.
Unlock access please is my call to action to the folks at ISC coordinating the great educational content and research summaries that are presented each year at conference. Many of the survivors who can’t get access to this information have stepped up and fundraised themselves for your organization.
My Call to Action to ISC
Let’s drop the small fees and open the doors for more to access this content and build their stroke knowledge please. I can tell you survivors and their families need this information and help now more than ever!
Am I Getting it Wrong? Please let me know below!